Brave Love: Book Review

I have followed Lisa Leonard online for almost a decade. I have loved getting to know their family through pictures, social media, and Lisa's blog, and getting a peek into their lives growing a business and raising their sons David and Matthias. David was born with Cornelia de Lange syndrome, and has multiple disabilities.

Lisa's heart has always shone brightly through her jewelry designs and blog posts, so when I first heard about this book, written in a memoir style, I couldn't wait to read it, and joined the launch team.

Lisa opens her heart with such grace and vulnerability in her writing. BRAVE LOVE tells her life story; from putting her needs and wants last to learning to do the work of making space for herself in her work, her marriage, and her motherhood.

I truly believe this book will save marriages and change lives. Recommended especially for those who struggle with taking up space in the world and putting their needs on equal footing with others'.

I was deeply moved by Lisa's disarming honesty, and proud to serve on the Brave Love launch team. I received a free advance copy by the publisher; all thoughts and opinions are my own.

Brave Love released January 29th. You can order it on Amazon, Barnes & Noble, or find it wherever books are sold.

Choose Joy: Book Review

Getting to know Sara through her blog changed my life. We were both bloggers in our 30s when we met in 2009. I was captivated by her bouncy red curls and her infectious spirit. Faith was another thread that wove us together. At the time, Sara was living with Ankylosing Spondylitis, a chronic inflammatory disease that attacks the spine and joints, and I was being tested for it. She was gracious to reach out to me during that time. Over the following couple of years, I was diagnosed and both of us experienced worsening pain and quality of life. There were many nights of severe pain, when I would lie awake in bed and re-read her blog posts. Sara was one of two bloggers living with severe health problems and pain that inspired me to adopt an attitude of joy, gratitude and positivity. I credit Sara with showing me how to live life with a debilitating, painful health condition with no cure. Joy has been as much a part of my toolkit as any treatment program. I firmly believe that without knowing Sara and reading her blog, my life with AS wouldn’t have been as manageable as it has been.

Sara passed away from complications in 2011 and I grieved along with so many others who knew her. A light went out when she died, but her candle of joy had lit so many others’ that her legacy has created a glow that burns brightly still.

That’s why I was so thrilled when I heard that Mary Carver, another of Sara’s blogging friends, was working with Sara’s family to put together a book of Sara’s writings. It was titled in tribute to Sara’s motto: Choose Joy! I knew this book would help continue to spread Sara’s remarkable legacy of choosing joy.

I have no words to express how thankful I am to Mary for putting this book together. Putting Sara’s blog posts into book form, while not taking over the spotlight, must have been no easy task, but Mary masterfully pieced her own thoughts, explanations, and transitions together with Sara’s words in a way that only highlights Sara’s writing voice. I was privileged to be part of the Choose Joy Book Launch Team and receive a copy of Choose Joy to read in advance.

Faith was a big part of Sara’s life and outlook, and as such, references to Heaven, God, and an eternal perspective are woven throughout Sara’s book. Whether you are religious or not, I think reading Choose Joy can be a deeply life-altering experience that will leave the reader thoughtful for some time to come. 

Although Sara’s circumstances were extreme, I believe anyone going through challenging things (be it illness, pain, isolation, loneliness, or loss) will benefit from Sara’s words.

You may very well find your perspective changed for the better from reading this book.

Choose Joy: Finding Hope and Purpose When Life Hurts by Sara Frankl and Mary Carver releases next week, Tuesday, January 5, 2016 from Amazon, Barnes & Noble, and other booksellers. You can pre-order the Hardcover or Kindle versions on Amazon now here.

For more information on the book, you can go to the Choose Joy Book site.

Stronger

I've been silent for far too long on this blog. 2014 was a year of crisis for our family. It's a very long story, and I don't have the heart to tell it at this time, but we are well now, and spending 2015 rebuilding and becoming Stronger (my word for 2015). 

I'm learning to live my best life with a couple of new diagnoses. But I am being completely honest when I tell you I'm doing better than I've been in years. And I'm so grateful. I've been wanting to write again and I have some really exciting things to share, but first I had to construct a little bridge from where I left my blog in early 2014 (before the bottom dropped out of my life) to now. If you're still subscribed after all this time, thank you for sticking around.

I'll be back soon with new content that reflects my Stronger, joy-filled, artistic adventures of late. 

If you're in a dark place right now, I'd love to encourage you that this is just one chapter of your life. Things can look so dark and bleak and you may think that your life is ending. Please hang on and know that a new chapter is coming. And it may just be the best one yet. The one you will look back and remember as a favorite. You're writing your story, and it's not over. Adventures await! 

A Stiff Upper Lip: Denial, Grief, and Acceptance of Chronic Disease

It's been over half my life since I first began having pain walking. I was 17 and a junior in high school. I credited to my hips but didn't think to wonder why a teenager would be having trouble walking. I chalked it up to too much exercise. I didn't see a doctor. I didn't think it might be a sign of something to come that would effect my mobility. My mobility was being effected but I didn't even think of it that way. Denial?

We had Ankylosing Spondylitis in our family. I knew it was arthritis and it effected the spine, but that was about all I knew. I didn't know it was a chronic inflammatory disease. I didn't know it was systemic and could effect your organs as well as your joints. I didn't even know it could harm your eyes or your hands.

I did not for a second put our family history of AS and my hip pain together.

It's been over half my life since my first symptom of AS. It's been 8 years -- I can't believe that -- since I began having a lot of pain. It's been about 7 years since I started waking with a stiff lower spine, 4.5 years since my oldest was in Kindergarten and I had my first of what I think of as a general autoimmune flare -- crushing fatigue, fever, swelling, nausea, and a general feeling of illness along with the pain, stiffness, and occasional limping.

I remember the days of waking feeling like I needed WD-40, and how I knew a hot shower and a couple of Ibuprofen would relieve my symptoms greatly. How much life has changed since then...

When I was in the process of being worked up for diagnosis -- was it Lupus, they wondered, Rheumatoid Arthritis; yes, they acquiesced, it could be Ankylosing Spondylitis since I had family history, but "that wasn't as common in women" -- I read blogs of women living with severe pain and medical difficulty. I was inspired and determined that I would be that kind of woman. I would be as positive as I could be, I would shine, I would move forward in a way that would inspire other people. By the time a rheumatologist confirmed my primary doctor's suspicions of AS, I was already certain I had it, and basically walked out of his office and forward into a life of Positive & Inspiring. That was what mattered to me, that I could help others know they weren't alone, that I could show how to live life in a positive, joyful way, even in the midst of pain and with a disease that often disables and disfigures.

It's been 3.5 years since diagnosis, and 1.5 years since a Spondyloarthropathy specialist told me that I have a full blown case of Ankylosing Spondylitis. Last year, still another rheumatologist told me I have a severe case of AS.

It's been on my mind a lot recently, the severity of this disease. How it hurts and cripples people-- people I've met online and in person, people I call my friends. I know people who've had spinal surgeries, hip replacements, people who are essentially homebound. I know people who have organ involvement, eye damage, who need all sorts of mobility aids including wheelchairs to get around. I know young people who have died of organ complications to AS, and to suicide.

The pain, physical and emotional, can be unimaginable.

Sometimes it feels like I have only allowed myself to be an advocate for those people. For everyone else with AS. Sometimes it feels like I have only thought of them fusing, of their necks curving and their heads being permanently locked into a forward stoop.

This disease is not a joke. Part of how I can move forward in a positive manner is accepting that reality. This is real and it has been life changing. More life changing than most people realize.

I am working on starting to allow myself to feel sad about that. Not just grateful despite the disease. Not just thankful it hasn't yet effected others who I share genes with. I won't wallow. But I do need to process and grieve how my life is effected, how my family is effected, and that my future will be effected by a genetic, chronic, systemic, arthritic, degenerative and progressive disease.

That's not wallowing. That's just moving out of denial and into acceptance. Acceptance is acknowledgement, and that can free us to move forward. Acceptance is not giving up, or giving in, or refusing to fight.

"God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference." {Reinhold Niebuhr}

Nature Journaling & Adventure-Based Learning

I thought I'd give you a peek into our homeschooling life by sharing intermittent posts on various ways we're learning. Hopefully this post will interest those who journal or would like to journal, and those who homeschool. For those who are new to Live Art.fully, I homeschool our two daughters who have recently turned ten and seven years old. 

Yesterday dawned sunny again in the Pacific Northwest (it's been beautiful lately, an uncharacteristically warm and dry winter). I had a bee in my bonnet to take my girls out on an adventure. We've been doing this lately and I'm loving it. We pack a jacket, mittens, simple lunch (cheese sandwiches, water bottles, and yogurt, for example), sketch books and paints, and off we go somewhere fabulous. 

This is our fourth year learning at home and I feel like this year we've turned a corner in terms of finding our niche. I'm learning how my girls learn best, and what makes and keeps me inspired. I've found new ways to prevent burn-out for all of us, and how to use my creativity to make learning fun. 

Yesterday we took our sketchbooks to a nearby nature trail. We ate our picnic of bread and cheese, blueberries, juice, and cookies at a picnic table under a sky my 7 year-old described as "neon blue." My 10 year-old disagreed with her sister, stating that it was not neon, just blue. Little sister explained that it was neon if you were wearing sunglasses.

After munching our picnic, the girls ran off nearby to explore and I set to work in my journal after finding a few nature treasures to sketch. Given the time of year, it took a bit more looking and creativity than it might in other seasons. There were no birds, butterflies, eggs, nests, feathers, or flowers.

Sketching under neon blue sky, with warm sun and still-crisp January air, it was quite easy to feel inspired. The girls chattered about how much fun they were having and even toyed with skipping ballet class, in favor of extending our nature time, but in the end we packed it up and delivered our dancer to the studio.

Something I've noticed about our nature-based learning adventures is that they leave us invigorated and curious to know more. Post ballet, we hit the library to look for books on nature journaling, and keeping a nature/field sketchbook. I found a great children's book on John James Audubon, The Boy Who Drew Birds. 

Nature journaling is a new form of journaling for me, and something I'm planning to incorporate into our outdoor learning adventures & field trips in the coming months. I'm excited to get these little watercolor sketches into my journal, and to see my girls document what they're observing in the natural world. What better way to slow down long enough to truly see?

Introducing.... My Word of Intention 2014

"If I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have the capacity at the beginning."

 {Mahatma Ghandi}

I've been thinking about my word for this year for probably six weeks, and it's been one of the main things on my mind recently. To be honest, where RECLAIM arrived whole and perfect last year, this year's word plagued me. Starting about last summer a word had fluttered into my life and landed... and that word, OVERCOME, was one that almost became my word this year. But I just wasn't quite certain. Another word almost made it: CLIMB. A word that would represent the daily journey of struggling, effort, perseverance, and the beauty waiting when we don't give up. 

But it wasn't as pretty a word as I wanted. And though it represented, for me personally, an intangible mental process I take on every day, I knew that by itself, it wasn't as self-explanatory as I might want.

"As is our confidence, so is our capacity." {William Hazlitt}

And then yesterday, when I was still engaged in the wrestling process of words, this word came to me...

CAPACITY

"Strength does not come from physical capacity. It comes from an indomitable will." {Mahatma Ghandi}

CAPACITY excited me, inspired me, and empowered me, and it did so on a day I am struggling with bronchitis/pneumonia. That was a litmus test for me -- as physical struggle is a regular part of my life, I need a word that will push and carry and comfort me on the bad days as well as the days that I feel I am capable on my own.

CAPACITY. To sum it up in five words, to me it means "I have what it takes."

It represents the infinite ability within us all -- to love, to be loved, to imagine and create, to build and invent, to grow, change, achieve, and yes, OVERCOME obstacles.

In the daily climb, CAPACITY is the mental fortitude to press on when legs throb. It is mind over matter. It is being Brave Enough. It is Doing it Anyway.

"The ultimate creative capacity of the brain may be, for all practical purposes, infinite." {George Leonard}

But I also needed a word that could mean finite. That wouldn't feel bossy when I needed the ability to be gracious with myself. When I need to rest more than press on. 

CAPACITY: maxed out. 

In these instances, CAPACITY will serve to remind me that while I may not have the physical capacity today, I will have it another day. 

I'm excited to see what CAPACITY and I can do together this year. Some of the specific things I want to be intentional about this year are using my words more. I didn't read or write much at all in 2013, and as a writer who was first a voracious reader, that doesn't speak well to me being my best self, on a soul level. I want to use my words to inspire and encourage people. I want my words to elevate and uplift, not to harm.

I see the capacity in YOU and I hope you let your potential take you places this year!

"You are beautiful. Your beauty, just like your capacity for life, happiness, and success, is immeasurable." {Steve Maraboli}

What is YOUR word this year?

She Chose to Be Brave, Take Risks.... Fly!

I created this art journaling spread to commemorate a risk I took. I wanted to remind myself that sometimes change is not just good, but necessary, that sometimes there are great things waiting on the other side of courage.

What I've learned is that sometimes it takes risking your life to save your life. 

Have you ever taken a risk that proved to be invaluable?

Soar Like Eagles

Steamed Milk & Second Chances

Very little matters to me at the end of each day and the end of this life, if my girls don't know and feel, clear to the cellular level of their beings, that I love them. If there was a way to genetically imprint this message into their DNA, I would. 

I LOVE YOU. 

Sometimes things happen and maybe it's as inconsequential as a rainy Monday when the errands didn't go right and I end up in tears when we get home. Maybe it's bigger and I vent frustration, and while my words are accurate, the timing or the delivery misses the mark and a little girl gets tucked into a warm bed -- safe, fed, yet short on the connection she's come to cherish in our relationship.

It was a night like that, after a rainy Monday like that.

I closed their bedroom doors, and went to rest, somewhere past the point of totally exhausted. I put them to bed early because after a rainy Monday when you're past the point of totally exhausted, it's the easiest thing to do. 

But kids are just like adults, in that when things aren't right with their relationships, it can be hard to sleep.

Daughter #1 made a valiant effort -- lying quietly in her bed long past when I thought she was for sure asleep. Long past the point that Daughter #2 had been allowed back up for snuggles with the mama-with-the-half-mast-eyes. 

There might have been a bit of classic Winnie the Pooh on DVD in the big bed. 

I was ready to send them back to bed when I heard a little voice say, "I hate to tell you this, Mommy, but I'm hungry."

....deep breath....

We went back to the kitchen. Sat back down at the wooden table inherited from my paternal grandma. Two little girls in pajamas, one holding a doll, one, a bunny, both of which are well-loved to the point of Real.

My legs throbbed from referred spinal pain. It felt more like 2 a.m. than 10 p.m. 

I got out the toaster. 

A gallon of milk.

Two small glass tea plates.

Something in my spirit shifted, and I set about making a little late-night snack of cranberry-orange toast and warm vanilla milk.

I told them memories of visiting my maternal grandma and how she would heat milk for me to sip before we turned in.

Their sweet faces brightened, and their eyes began to glaze with dreaminess as they munched their toast spread with cream cheese, and drank their cobalt mugs of steaming milk.

At that moment, I knew this was the right way to parent. This night, for these girls, these hearts. The right way to love them was to send them to bed with hearts dosed full with love and nostalgia, warm, full tummies, and snuggles in the rocking recliner.

I'm grateful for the times when bad days get second chances, and second bedtimes lead to sweet dreams.

Five Minute Friday: Ordinary

I love the ordinary. While others derive pleasure from planning the next trip or event, I long for the simple and routine. I love the ordinary snatches of everyday life.

Stirring another pot of steel cut oatmeal (or "Bunny Kibble," as Natalie has dubbed it).
Folding another load of warm laundry.
Another six minute drive to dance.
Reading the next chapter of Charlotte's Web before bed.
Hitting the start button on the dishwasher.
Tucking her in with a prayer to the sound of Hidden in my Heart lullabies.
Washing those thick pink ballet tights again.
Writing another blog post and putting clean sheets on the bed weekly.

When we lose those we love, the ordinary is amplified to extraordinary. Every memory including them is more special, more treasured.

This year I lost my sweet Auntie to terminal cancer. She was 58. And all of the ordinary weekends we spent together, the ordinary drives, and ordinary meals around an inherited table, have become the most precious of recollections.

Loving the ordinary is a way we can love God -- to give weight and gratitude for every moment. To truly recognize the gift that is in the 24/7 of this life. I love the ordinary because it lives in the extra{ordinary}.

STOP


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Five Minute Friday is a weekly writing exercise hosted by Lisa-Jo Baker. Set a timer and write for five minutes without stopping and without editing, then link up with Lisa-Jo.

Hello First Fall Monday!

Just a quick little post today to say hello to Monday and the week. I'm linking up with Lisa Leonard from Lisa Leonard Designs. Do you know Lisa? Lisa is mom to two boys, wife to Steve, lives in Cali and is a jewelry designer, photographer, and all around creative. Love her blog. Go visit!

Hello Monday!
Hello steel cut oatmeal with brown sugar, cinnamon & cream
Hello coffee in my Penguin Books mug
Hello Peppermint Mocha creamer (YAY, it's that time of year!)
Hello getting the laundry going
Hello costochondritis
Hello doing math with my 6 year-old
Hello getting organized for the week
Hello still-in-my-pjs-at-2-pm
Hello first week of Fall
Hello Fall TV premiere week!
Hello rain, I've missed you...

What's your Monday holding? I'd love to hear. Share in the comments, or jump in and link up with Lisa.

Changing Seasons: Transitioning to Life with Chronic Disease

Three years ago today, September 22, 2010, I received my official AS diagnosis. I had a 'probable' diagnosis a few months before that from my primary doctor. But it was 9/22/10 that I spent two solid hours with a rheumatologist and heard the words "I am diagnosing you with Ankylosing Spondylitis." It wasn't a shock. If anything, on that day, I just felt relief. That may sound strange -- to be relieved to hear confirmation that you have a life-changing disease -- but I've heard the same sentiment expressed by many others with chronic diseases. The unknowns are hard. It's nice to just know.

It was chilly enough last night to slip on my flannel penguin pajamas, a pair I don't wear during the summer because they're too warm. I went to bed with it Summer and woke up to Fall.

That's a bit how life felt when I developed this genetic, chronic inflammatory disease that attacks the spine and joints, and can also pounce on eyes and internal organs, cause fevers and pronounced fatigue.

Life, unencroached upon by chronic disease, is somewhat like Summer. The weather's more predictable, you can get out more, you don't get 'rained in' by symptoms that weren't forecasted. You don't need as much gear to brave the elements.

But just like fall, with its rainy days by the fire and long crisp nights to go on hayrides and watch football games and go for walks in the crunchy, colorful leaves, life with chronic illness can hold beauty. It may be a different beauty than pre-diagnosis "summer" beauty, but it's beauty just the same.

Adjusting to life with a chronic disease can throw you for a loop. People grapple with depression, reinventing themselves, doubts and fear about their futures, and even, at times, despair. In my three years of being an official "Spondy", I've personally known of three others who have died at a young age: two to AS-related organ complications, and one to suicide.

I guarantee that unless you have such a disease or are very close to someone living with one, you don't know the half of what life is like post-diagnosis.

Being a "fall" kind of person to begin with (someone who enjoys writing, reading, and a more indoor, home-based lifestyle), perhaps I'm better suited for this type of diagnosis. I think of people who love being outdoors and pushing the adrenaline envelope, and I'm truly grateful that no part of my essential self is tied to activities I can no longer pursue. If one may end up in a wheelchair, using a cane, or undergoing hip replacement surgery, wouldn't it be better for a writer than a racer?

Seasons change. My life is altered by chronic disease. I'm still learning and growing as a person living with AS.

Stand tall and walk on, even if you have to limp. Life goes on and it is beautiful, even with its storms.

Q&A: Creating an Artful Life with Kids

Months ago, I received an email from a friend. With her permission, I've posted part of it here:

Q: "I love the pictures you post of you and your girls doing artistic, fun things together. I love seeing what your daughters come up with, and how creative they are, just like their mama. The reason I'm writing you is because I want help. Lol! I want to know how you started being creative with your kids, how old they were when you taught them how to journal and create with various media, and how you encourage artistic creativity without feeling like you're forcing an ideal upon them.

I want to be creative with my girls. I want them to get the chance, from a young age, to draw, trace, paint, colour, write, sketch, or whatever. I want them to have the chance to ENJOY art. Because I don't know how to approach something I'm not good at. 

Any suggestions/advice/tips? Thanks for your time."

A:

First of all, thanks for your question, and my sincere apologies for taking so long to answer it. 

I didn't always do art. I spent the better part of my life pushing against anything that suggested I even try. I told myself I was a writer, I was creative, but in no way was I an artist or the least bit artistic. I journaled, I wrote, I scrapbooked, I doodled, I collaged. But I drew the line at anything requiring a paint brush. I knew absolutely nothing about canvases, brushes, different types of paint, etc... and am still slowly learning my way around those sort of supplies.

When my firstborn daughter was about 1 or 1-1/2 years old, I bought jumbo crayons. Crayons didn't intimidate me in the slightest. I bought coloring books, activity books, notebooks, and little journals in the years to come. 

At some point I bought WASHABLE Crayola watercolor paints for kids. Emphasis on washable. At that point I was very hung on up messy, and anything that was going to be messy I resisted. Especially if it was unfamiliar. I would bake cookies from scratch, but painting was out of my realm.

So to start with, there were crayons, white printer paper, and washable watercolor paint sets that came with a single kids paintbrush. That's where we started. You can get all of that for $10. It's a basic place to start -- blank surface + color.

Color + Heart = Art.

Through the years, we've learned together, the girls and I, about canvases (buy packs at art/craft stores to save money), different types of paper, and various media such as pencils, paints, oil pastels, etc...

If you're ready for a little more than Crayola's basic art supplies for kids, you might buy a combo pack of paintbrushes of assorted sizes, a pad of watercolor and mixed-media paper, a spiral bound blank book for each child, and some inexpensive but surprisingly nice quality watercolors. I LOVE these Loew-Cornell Simply Art Watercolor Cakes. Under $7, luscious colors, and I have personally used this set for over a year for all of my art journaling and art projects. 

Some additional supplies you might consider are easel rolls of white paper, construction paper, glue, Mod Podge, markers, gel pens, and stickers. When we went "Back to School" shopping for this year of learning at home, we bought each girl a sketchbook, a paint and marker paper pad, whatever new crayons/makers/paints they were low on or had used up. Art is incorporated in our home learning and playing.

For a person who had no artistic experience, and was quite frankly completely intimidated by anything art-related, I have learned to whole-heartedly embrace art and its messiness. 

If you're worried about the mess involved, I recommend a drop cloth or old sheet, art smocks or aprons, Mr. Clean magic erasers, all-purpose cleaner sprays, and paper towels. The type of media (paint, markers, etc...) you purchase can make the clean up process easy-peasy or a little more of a challenge, so consider before it goes in your shopping cart what level of clean-up commitment you are prepared for.

My girls are 9 and 6 now, and there's only one art product we own that I'm not prepared to clean up on a daily basis, and that's tempera paint. It's messier and thicker, and will temporarily stain skin. When we use that kind of paint, I need to know that we're staying home all day or at least have a several hour chunk of time I can devote.  Sometimes for school we have Art Day, and that's the type of day I usually pull out the more messy, time-consuming paint and craft projects, like homemade Play-doh.

As for my art "philosophy," I believe everyone has the ability to be artistic. I think art and creativity are things we need to introduce kids to at a young age, and make available for them to explore throughout their growing-up years. I believe fervently that life will knock you around, and that we all, regardless of age or background, need something to help us process, heal, and calm. For some that might be running or some type of sport. For others that might be gardening, baking, or music. Or it might be journaling or painting or doodling. I want to be the kind of parent who introduces my kids to a variety of activities that they can choose from when they need a place of solace, inspiration, or therapy.

There's no right way to do art. There are no mistakes. Art should not be graded. Just give your kids some tools to explore and make something colorful. Hang it, frame it, and show them their art has value.

Create together. If you sit down with a notebook and some colored pencils and start doodling or sketching, most kids will gravitate to you and show curiosity and interest. You don't need to have any artistic ability to introduce kids to art. All you need is a willingness to play and try new things.




More resources on creating with kids:

Tinkerlab
Ucreate with Kids

The Art of Living Well with a Chronic Condition

This is the first post of a new blog series. The posts in this series will include my thoughts on a variety of subjects, all beginning with "The Art of."

Today I want to talk about the Art of Living Well with a Chronic Condition.

To begin, a little disclaimer. I was diagnosed with Ankylosing Spondylitis 3 years ago this month, but have been living with chronic pain since 2005, when I lost a baby and went through a chain of operations. I also spent about half of high school in chronic pain. So while I am a bit of an AS "newbie", I am not new to chronic pain, and have the scars to prove it.

I was very fortunate in that I discovered two bloggers in the years leading up to my AS diagnosis. Two female bloggers living with chronic pain. One was Sara Frankl, who lived an incredibly inspiring life and taught countless people (including me) to Choose Joy. Sara died in 2011 of complications to AS.

The other was NieNie. Stephanie Nielson was severely burned in a private plane crash. She nearly died. She has endured countless operations, skin grafts and more in the years since.

Both showed me that it was possible to Choose Joy no matter your circumstances, and that you could inspire people while doing it.

I determined in the summer of 2010, during a journaling session in a coffee shop, that if Sara and Stephanie could do it, so could I. Regardless of what came my way, I decided I would make as many commitments and recommitments as needed to adopt and maintain an attitude of joy and gratitude.

I encourage you to visit the above mentioned blogs and read some of their stories.

Here are some of my personal tips on living well with a chronic condition:

1.) Decide that no matter what your condition takes from you, you will fight to retain your identity. Do everything you can to ensure that your physical health does not rob you of what makes you unique. Adapt, modify, replace a hobby with a new hobby, but do not let go of your essential self.

2.) Do not give in to bitterness. Yes, you have a chronic condition, and no, it's not fun. Many others do too. Some conditions are more difficult than yours, others less difficult. This is yours. Grieve it, accept it, and then get on with the business of living your best life despite it.

3.) Differentiate your physical self from your mental/emotional self. I think of my body as a house. I live inside that house. AS likes to wreak havoc on my house. Inside the house though, I am unshakeable. I am stable. I am joyful. I am just fine. As Sara Frankl said, "My body is brutal, but I am good."

4.) There will be times when you simply can't be happy. Get angry, but deal with your anger in a healthy way. Don't take it out on those around you. Cry it out, then start again. You will have moments, hours, days and weeks when this 'chronic' reality is not ok. It's okay to acknowledge that.

5.) In order to live with a chronic condition, you will do well to simplify your life. This is a great opportunity to use your boundaries, know your limits, and say "no." Your pain and illness will take time. Scale back in other areas and you will find that you are less stressed. Stress can lead to pain, so don't underestimate the value of limiting the things which will cause you stress.

6.) Make time for the things that feed you. Just as stress will negatively impact you, nurturing yourself will benefit your health. So take a walk, paint, sit at the beach, journal, play music, watch a funny TV show, have dinner with friends. Do what feeds you. If you don't know what those things are, try making a list of your activities and then make a note of how you feel during and after those activities. Writing energizes me. Painting soothes me. The ocean inspires me. Being around people too often or for too long drains me. When you have a better idea of what drains and energizes you, take care with your calendar and schedule things appropriately.

7.) To the best of your ability, take good care of yourself. Stay hydrated, get as much quality sleep as you can, rest when you need to, eat nutritiously, and keep your body moving as you are able. Don't assume that your condition is responsible for every symptom you have. Your choices and lifestyle may be playing a part as well. Do not ignore new or worsening symptoms.

8.) Your abilities may ebb and flow. Learn to go with the flow. When I can walk without aggravating my joints, I gratefully do so. When I can't, I don't. It will be worth your while to see the professionals best suited for your condition and work with them to gain the best understanding you can of both how your disease or illness typically present themselves, and what's currently happening with your particular case. My months in physical therapy were very helpful in learning about my particular mobility, what parts of my body were referring pain where, and what would be helpful and harmful for me, in dealing with mobility and AS. Working with a good rheumatologist, and having appropriate tests done has been incredibly helpful too. I find it's far less stressful and fearful to know what's going on with my body than to worry about it and not know.

9.) Create or maintain a support system. When you are able, be there for others. When you need help, learn to ask for it, and accept it. Severe levels of chronic pain quickly cause a sense of isolation. That sense of being alone can be detrimental to your well-being. Reach out!

10.) Cultivate an attitude of gratitude. No matter how bad things are, there is always good if you look hard enough. Keep a little notebook and try to jot down a few things every day that you are thankful for. Jot down beauty around you, compliments you receive, and inspiring quotes. List things that you have -- shelter, food, clothes. Start broad and basic and you may find your attitude changes quickly. In my experience, gratitude, especially when I name it out loud or write it down, creates joy.

I hope something here helps you when you are struggling with your reality. Life still has a great deal to offer, and you are not alone!

A Summer of Overcoming

I winged my way through an astonishing summer. Partly due to an effective treatment plan, partly due to my proverbial wings {essentially: pure courage}, and partly due to necessity. I was as close to thriving as I've been in years, but still, summer was a blur of activity and "too much" for this reflective, home-based creative with chronic pain.

It was a summer I'll cherish the memory of because it was packed and fast-paced, and I did it well. I'm still trying to process 1.) what all happened this summer, and 2.) how exactly I managed it.

I took my girls on day trips by myself -- days I drove and was away from home for many hours. I haven't been able to do that in a long time.

I hiked in the forest, and walked in my neighborhood, and experienced the zoo many times.

I did a road trip.

I navigated driving in places I haven't been before.

I took my kids to a lot of places and have the pictures to prove it.

I reclaimed, rose above, and overcame.

It was good. So good.

And I did hard things. Like saying goodbye to sweet auntie who died of terminal cancer in July. Like supporting a friend who said hello and goodbye to her baby girl in the space of an hour. Like things that were stressful and felt nearly impossible.

But it's mid-September now and I've gotta say:

I'm exhausted.

These exuberant "overcomer" wings are feeling ripped and rumpled. While I cherish the memories of reclaiming my independence this summer, hiking, trips, and an astounding amount of activity; while I look back on that with satisfaction, gratification, and astonishment, I'm desperately in need of rest now.

Whether it's due to seasonal changes (summer morphing into fall), or having overdone it on a pretty big scale, I am battling exhaustion, headaches, nausea, limping, morning stiffness, and the symptom that puts the fear in me faster than any other -- waking with a spine that feels shattered.

I desire nothing more right now than to hibernate for a couple months. To settle back into my cozy nest, snuggle my family, put my feet up, hang up my wings, and recover.

Back to our little cottage. Back to dance classes and learning at home. Back to {hopefully} writing and blogging more.

As it says in the Bible, there are seasons for things. Summer was an overcoming season. I'm hoping fall can be a recovering/rejuvenating season.

What kind of season are you in? How was your summer? Did you do brave things? Did you make great memories? I'd love to hear about it.

Wings: The Perfect Accessory

If you follow Live Art.fully on Facebook, you've no doubt noticed a theme over the last months.

WINGS

What does it mean when I say Use Your Wings, Rest Your Wings, Put On Your Brave Wings?

A couple of months ago, I had a week where my sacroiliac joints (the joints that connect your pelvis to your spine) were really flaring. They were swollen, which made them feel as if they were trying to jut through my skin. The pain was impressive. It was a week of Keep Going, just like almost all weeks -- do the laundry, do the dishes, clean the house, vacuum the floors, drive daughter to dance, pick up daughter from dance, take other daughter to the library, get groceries, rinse and repeat. 

Sometime during that week I realized that it felt like giant metal wings were trying to grow out of my back. Perhaps that's graphic, but as a writer and as someone with chronic pain, it often helps me to put my pain into words. I find it helps separate the pain from my self, if that makes sense.

As you can imagine, having metal jut out of your body isn't a good feeling. I've had this description crop up even in my sleep. Once I was having severe chest pain in my sleep. I dreamed that I was in a lot of pain, lifted my shirt and there was a bunch of metal that had erupted through my chest. In the dream, I very calmly noted this wasn't good, went to a doctor, told them I had Ankylosing Spondylitis and showed them my metal/chest. Ha!

So back to the Giant Metal Wings week, I realized that if instead of thinking, "My back is in such pain!", I thought of the pain as Growing my Wings, I could handle it better.

I wrote a little poem that day which included a line that said "my back grew wings." It was a symbolic, positive way of expressing my pain without spelling out the horror.

Famous artist Frida Kahlo was severely injured in a trolley accident in college and spent the rest of her life battling severe pain. She's quoted as saying, "Feet, what do I need you for when I have wings to fly?"

That quote has become one of my favorites. When I'm having trouble with my mobility, I tuck that in my proverbial pocket and choose to "fly" for the day. It then doesn't matter if I'm in pain or if my feet aren't working properly or my hips or my knees, because I have wings. It's a mental game really; it's how I {Rise Above}. I find these mental games, and word phrases and images are a vital part of my pain toolkit. Maybe it's because I'm a writer and words hold such power for me, but I find that if I can just determine the right way of looking at things, I can soar.

Now when you see things in my art about flying, soaring, or wings, you'll know what it means. For me, more than anything, it's realizing the power of a positive attitude, and putting on that attitude like armor.

I may wear lounge clothes, a dress, or jeans, but I often add an invisible accessory, my wings!

Mountains & Valleys: Living the Real

Some of my favorite blogs are written by women with health problems -- cancer, lupus, RA, AS. Others inspire me artistically or encourage me in my faith and motherhood. A couple others are just fun -- how she organizes her house, for example.

But I realized tonight when I logged into my blogroll to check up on some of my blog-writing friends that the blogs I check the most frequently are the ones that show the authentic truth -- the good, the bad, the ugly. I like to see the view from the mountain top when my friend has conquered obstacles, and I like to be allowed into her fear and sorrow valleys when something isn't going well. I like the whole picture.

It's been quite a while since I've written. I'm not really sure what to say. My life has had some mountaintop views in the last few months, and it's had some valleys. The thing I look for most in other blogs -- vulnerability -- is what's hardest to share on my own.

And isn't that life, the ups and downs, the mountains and the valleys? And isn't it disorienting when it's both all at once? That's how my life feels right now... mountain top views and valleys of fear and sorrow.

I've been mostly better with AS. A lot better. I'm in a flare right now, and that's discouraging, but mostly lately I've been so grateful to be feeling so much better. I've been busy Reclaiming my life -- organizing my house, catching up on myriad things, renewing relationships, reclaiming myself. That's been good and busy and I realized a couple weeks ago that although the pain was vastly better, I was exhausted and was perhaps overdoing it with the Reclaiming. Then I flared up and the old stuff came back -- nausea, low-grade fever, broken spine in the mornings, and stiffness and pain in joints that felt almost cured.

I knew I had overdone it and was pushing too hard. But the thing I'm finding is that once in Reclaim mode, it's really hard to go backward. It's really hard to find the time to rest more.

A new symptom occurred and tomorrow I'm going in for some tests. The old fear flares back up with new symptoms. But I'm trying to live in the now. Not in the tomorrow, not in the next year, not in the what if.

Perhaps soon I'll pop back in and tell you some of my adventures I've had Reclaiming.

For now, if you're one who blogs "Real", please know that it matters. And that it encourages me to blog real too. Much love and warm hellos to all.

She Went Wading in Her {Ocean of Dreams}

Original Art Journaling by Jennifer LeBlanc 2013 | All Rights Reserved

Have you ever had a dream so big that you kept it quiet, all to yourself? Maybe you had other dreams that you shared, but not this one?

I have a dream like that. An ocean-sized dream. And I've been exploring it lately. I've been wading in my ocean-sized dream. Tip-toeing in, feeling the rush of the waves pull out, leaving my feet firmly planted in the seafloor.

In this art journaling spread, I was trying to capture the feeling of checking out the water. Is it too cold? Is it too deep? Will I sink or swim? Are there sharks?

Do you have an ocean-sized dream? When was the last time you tip-toed in? Think of all the people who inspire you -- what if they never dreamed ocean-sized dreams? What if they never jumped in?

She Chose to {Rise Above}

{Original Art Journaling by Jennifer LeBlanc 2013. All Rights Reserved}

Inspiration for my various creative interests hits intermittently. This week I was driven to the Mod Podge and messy art to hammer out a theme that was floating around in my thoughts for the last two weeks:

Rise Above

I don't know any women who aren't battling some kind of personal war. Maybe it's a health condition (I personally know women with Stage IV cancer, CFS/ME, Fibromyalgia, thyroid conditions, Rheumatoid Arthritis, Diabetes, Ankylosing Spondylitis, Interstitial Cystitis, chronic debilitating dizziness, migraines, chronic pelvic pain, and the list goes on...). Maybe it's navigating the waters of divorce, single parenthood, raising a child with special needs. Maybe it's depression, anxiety, financial stress, job stress, toxic family members, going back to school, or loss and grief.

What's incredible is that most of the women I know consistently deal with more than one challenge at once. And they show incredible strength and courage as they do so.

{Rise Above} is a spread that wanted to show that process. How it looks in my life. Your Rise Above spread would likely have different stones of difficulty at the bottom, and different clouds of creatively rising above.

Some of the stones in my life are Ankylosing Spondylitis (AS), miscarriage, multiple surgeries, pain, missing my child who never reached my arms, and severe fatigue.

What are your stones? What stones do you see women around you overcoming?

I love the layers of meaning in this spread. The lady has lassoed her dreams that are seemingly unattainable. She is holding them like balloons or flying them like kites. They are pulling her up, hot air balloon style, in her cage of difficulty, helping her soar above the stones that could trip her.

She's using her dreams to help her rise above. 

Another thought I had while working on this spread is that our stones of difficulty can either be stumbling blocks or stepping stones in life. Which are yours? 

You might use this as a prompt for journaling or an art project. What are your stones and how do you rise above? Or take a few minutes to jot a note to someone you see fighting to rise above. Tell her you admire her strength, offer help, or drop off flowers or cupcakes at her door. There is perhaps nothing more inspiring than women coming alongside other women. 

A Different Kind of Love Story

"How could one person, not very big, leave an emptiness that was galaxy-wide?"
{Sheldon Vanauken, A Severe Mercy}

Dear Jordan,

Seven days ago I was walking around, alone, in Target... something that rarely happens. I passed the baby section and felt it again, that pang of loss. That deep ache of missing you. I have had the gift of giving birth to two healthy babies, your sisters. I have had the experience, twice, of caring for a newborn, of nursing and sleep deprivation, and I have raised them past infancy, past toddlerhood, past the preschool years. Your sisters are now six and nine. I don't take that gift for granted. But it doesn't erase the pain of what I missed out on with you. You are unique and I lost you.

There's just one you.

Which is why the tag on a small soft elephant designed for babies slays me. The tag that says Just One You. Carter's is so right. Each baby is a precious, irreplaceable individual. That's why the part of my heart that belongs to you will always be empty. Because you aren't here to fill it.

You are forever a baby in my mind. I cannot imagine you as a school-aged child. You are only what you ever were -- a tiny baby unblemished by the hardness of life. You are only love.

To talk about you is to validate you as real. You were not a dream or a nightmare. Seven years down this road, when I mention you, people may assume I have not healed. This is untrue. I write about you to honor you as my child, and to record you as part of my legacy. I talk about you to untangle the ethereal thoughts and emotions, to sort what can't always be sorted.

I speak of you to give myself the gift of loving you out loud.

Ours is a different kind of love story.