A Fervent Wish: Happy New Year

"We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year's Day." {Edith Lovejoy Pierce}

Many of the last several years in our family have been hard. There have been multiple surgeries, severe chronic pain, stress in all shapes and sizes, etc… But at the end of all of those years, I've been able to honestly say, “This year was a hard year, but it was a good year.”

Tomorrow begins 2013, which causes me to reflect on the year of 2012. While good things have absolutely happened this year, while there has been great joy, I have to admit that overall, 2012 has been one of the most difficult years of my life. 2012 has tested every part of me.

I’m happy to be wishing 2012 farewell. I’ll take the good memories into 2013, so many of them stored neatly in the spiral-bound books I filled this year. I’ll take the lessons and the strength of character it gave me. But I don’t want to look back on the bad.

I pray 2013 is kinder and gentler.

Tonight I will be cozy in my living room, with Christmas tree lights and my husband. We will eat cheese & crackers, drink sparkling juice, and watch movies. At midnight, we will kiss and mumble our way through Auld Lang Syne like we always do. We will say "Happy New Year!"

I dearly hope it will be happy, for our family and for yours.

Through My Eyes

I look for beauty in every day. Every day, whether at home or out, I keep my eyes open for gifts. I can always find them in nature -- a little bird, a wildflower, clouds, trees, water, skylines. That's easy. But sometimes I'm indoors all day, and so then I have to look a bit harder to find the beauty.

But consciously or subconsciously, it's my daily mission to find it. When I do, I like to capture it. Here are some views of beauty through my eyes.

I hope you noticed the beauty this Christmas season.

The Writer in the Rheum: Fighting to Retain My Identity with Chronic Disease

For some reason, I'm shy about discussing my treatment choices in public forums such as Facebook or my blog. I believe treatment choices are highly personal, and tend to be controversial. I have friends and family who believe only in natural/alternative treatments, I have friends and family who believe only in medical treatments, and I have friends and family who believe in a combination, or integrative, approach.

Thankfully, I also have some friends and family who believe that the person effected should be the person to make the decisions about their own care, regardless of what they personally would do.

I still don't feel comfortable writing about my choices in regard to my treatment plan, but maybe someday I will. What I would like to say, is that a couple months ago I switched things up significantly, and about nine days ago, I started feeling better.

I have said many times that no matter how much pain I'm dealing with, I want to choose not to suffer. I believed in that concept strongly, but have to admit that the last month or two has been rough. My quality of life was shot, my pain was raging out of control, and morning stiffness? Let's just say that on Thanksgiving, it took about the same length of time to "thaw out" my spine, as most people spend thawing out their frozen turkeys. I was in a place that felt unending. I felt almost physically sequestered from my own life and my family. I wasn't enjoying my life, and I was clinging to the concept of hope -- that maybe something could still turn my life around. But, to be honest, I wasn't sure it was out there.

My spinal pain was nearly unbearable. I woke every morning feeling as if someone had broken my back in the night. I could barely move, I couldn't bend, and the pain was reaching the upper limits of my experience.

I spent a great deal of time with a question rattling around through the haze in my brain:

Is there a writer in the rheum?

I am a writer. Other than being a mother, it's my highest calling, highest pleasure, and how I identify myself.

I was losing my ability to hang onto the dream of ever finishing my book, of ever writing articles again, of even getting back to this blog. I long to inspire others to face their lives with creativity, positivity, and an authentic lifestyle of thanksgiving.

But I was drowning. I have spent months fighting to stay afloat, fighting not to go under.

I felt I was in a cage of severe pain, and it was becoming harder and harder to function and interact.

I was afraid that I was losing my fight to maintain any quality of life, and that my dream of finishing my book, and starting new projects, would be unattainable. I was afraid that with a rheumatic disease raging out of control, my "writer" self would be lost.

I really don't know how much more I could have endured without some part of me slipping away forever; without losing my smile, my ability to be a friend or a good mother, or a writer.

I'm grateful beyond words (and as I've said here, words are kind of my thing) to say that I'm doing better. Just as I didn't know how to fight my way to the surface one more time, I'm doing better. I don't know if it's the change in treatment plan, or if I was in a brutal flare-up that is ending, but whatever the cause, I am unspeakably relieved.

A week ago we went to a Christmas concert. During intermission, I walked with my six year-old up and down three flights of stairs. I couldn't have done that before. I'm still excessively tired, I'm still running low-grade fevers frequently, and pain is still present, but the glass wall separating me from my life and my family has shattered down. I can touch them now, I can interact again, and my mind is starting to awaken.

I'm more committed than ever to write.

Because, you see, this is my story. It's mine and it's true. And maybe some part of my difficult reality will ease some hurting part in you.

Please don't give up on your dreams and fighting for your best life. I made a choice to fight, and I'm so grateful to be emerging from this dark place.

Between Hope and Joy

{Original Art Journaling by Jennifer LeBlanc 2012}

I've been in really rough shape. You know that if you read this blog much. 

A month ago, after a full spine MRI done to evaluate my Ankylosing Spondylitis, I was told that my MRI had shown something concerning. They recommended I have another MRI. If they saw what they thought they saw, they said it was potentially serious and unrelated to AS.

It was sixteen days of waiting and anxiety before the 2nd MRI. It took 90 minutes, and it was difficult. The pain had been at an all time high, and lying on a flat, hard table and holding extremely still for that long was really hard with AS.

I tried to breathe evenly and I prayed. I thought about my girls and my life. I thought about what life might be like with the serious disorder they were trying to rule out or confirm. I thought about how much worse my life could get, and how hard it already is. The pain was bad but I didn't want to blur my images or make another MRI necessary, so I held completely still and bore it.

It was dark outside when my husband and I drove out of the parking garage at the building where I had the test. I knew news would be coming in the next 24 hours -- news that might make me feel extreme gratitude that "all" I have is AS, or news that my life was going to change yet again, and not in a good way.

Throughout the 16 days I told very few people. I didn't want to worry anyone. But it made it difficult to journal or blog or even update my Facebook status. I was holding my breath. My last post was during that time. The fear was so strong.

The day after the MRI, I received two sets of news. One, the serious disorder they thought they saw I do not have. They ruled it out. Just to give you an idea of the fear I was dealing with, one of the potential results of that disorder is paralysis.

Relief.

I also found out I have more issues with my spine than I previously knew. That news was hard for me to process, but two+ weeks later, I'm at peace with it.

A lot has been changing in my life, and I'll post again soon. But for now, I've come out of the dark, and I wanted you to know.

I'm somewhere between hope and joy, and it feels tremendous.

Just Breathe

I'm holding my breath... in life, and on the page. I've noticed this pattern in myself when life gets scary. I hold my breath.

I finally came to this composition screen for you -- my friends, family, readers whom I've never met.

One of you emailed me recently and said that you feel connected to me, because someone you love lives with chronic pain. You said when I don't post for a while you get concerned.

I hate the idea of concerning you.

So here I am....

{shy little wave}

I'm feeling pulled in. Pulled into myself, to my house, to my physical frame. It's quiet in here, listening to the beat of my heart, and sometimes it's loud... the thud of fear echoing off walls.

There's no point in worrying. I know this. I understand this. But when it's your life, your future, your uncertainty, you might fear too, I think.

It's been a rough few months. I've been doggy-paddling, keeping my face above water, trying not to drown in the incessant fatigue and pain that stalks. I've been keeping hope on the horizon, centering it in my sights. I've been counting my blessings, naming things I'm grateful for... recycling the smallest of daily minutia into joy, squeezing it through the thanksgiving mill I'm hand cranking.

Perhaps you're here too?

Keep looking for beauty.
Keep taking one more step.
Keep counting your gifts.
Keep taking one more breath.

When the results come in, and the dark night passes, surely there will be a new day.

The Gift That Keeps On Giving

I've hit a really bad patch with my chronic illness.

The fatigue is drowning me. The pain is pushing me to my limits. And don't ask me about my ability to think, concentrate or spell. What once was easy is now a marathon of limitation and difficulty.

I limp to bed discouraged. I'm crying. Again. A rotating calendar on my nightstand catches my eye. It's the God in the Moment Inspirational DayBrightener by DaySpring. Its daily quotes are taken from one of my favorite books, One Thousand Gifts by Ann Voskamp.

The quote says:

YES! Not "I'm worried." Not "I'm stressed out."
Not "I'm anxious." Not "I'm too afraid." Hear me say thank you.
Hear me say YES! Watch me live a life of yes. 

A few days later it says this: "God created the world out of nothing, and as long as we are nothing, He can make something out of us." Martin Luther's words hit me right where I am, feeling emptied of all strength and ability. I am weak and He says that in my weakness, His strength is made perfect. How does that work?

I've been wanting to reread Ann's book, but I can't concentrate long enough. DaySpring sends me two things to review and the other, the little gift book of Ann's words and photography, is just right. Beautiful pictures that remind me to breathe. Beautiful words in bite-sized chunks I can handle.

In this very hard time, in a time of waiting and hanging on to hope, Ann's reminders buoy me. Oh yes, I think, this does help. I'll say thank you for what is good. I'll say thank you for what I can still do. I'll be grateful for the supportive people in my life. I'll try focusing on the good because it will be amplified.

Chronic illness presses hard, crushing the breath out of me. My chest hurts, my hips hurt, my ribs feel broken.

Chronic gratitude infuses life, a whiff of grace. It's the gift that keeps on giving.

So tonight, after a particularly hard pain day, I type this post not just to review these beautiful products, but to say Thank you to God, Thank you to Ann, and Thank you to DaySpring, for reminding me of what and Whose I am, all I have to be grateful for, and how to make thanksgiving a lifestyle.

*DaySpring sent these products at no expense to me, in exchange for my honest review.*God in the Moment DayBrightener can be ordered here; One Thousand Gifts Photo Gift Book can be found here. 

A Legacy of Chronic Joy

A year ago today the world lost a bright light. A family in the Midwest lost a daughter and sister. Many of us in the blogging community lost a friend. I’ve written about her before. Maybe you read her blog and ‘knew’ her, as I felt I did. Maybe you have never heard of Sara Frankl, also known affectionately by her family and blog readers as Gitz.

Long before I blogged or knew I would be diagnosed with Ankylosing Spondylitis, I stumbled upon a blog written by a curly-haired red head with a great smile. I was intrigued immediately to read that this young woman, not much older than I, had AS, a chronic inflammatory disease that attacks the spine and joints.

I had known about AS since about the age of seven, when my dad was diagnosed with it. I liked to say the words, the many syllables tumbling off my tongue. I liked to wow my elementary school classmates with my ability to spell it.

What surprised me about Gitz and her diagnosis was that I had always heard the diagnosis my Dad had was a men’s disease. Women supposedly didn’t get it.

I had first had trouble with my ankles in early high school. A year or two later, my hips began to be a problem. I can’t remember not having back pain, but I thought that was normal. I thought everyone’s back hurt.

During my pregnancy in 2006, with my daughter Natalie, the pain became significant. I struggled to walk, sleep, dress, or get in and out of a car. The doctor thought it was Round Ligament Pain. I gained a lot of weight and when Natalie was born at 38 weeks, 4 days, she was 9 lbs 8 oz. When the epidural kicked in, it was the first time in my pregnancy that I hadn’t had pain.

During Natalie’s baby years, I was breastfeeding, partially co-sleeping, potty training my older daughter, and doing all of the tasks that need to be done with two small children and a household. I chalked my back and neck pain up to that. “I must’ve slept wrong,” “I shouldn’t have given Hannah a horsey back ride,” “I’m not sleeping enough for my body to heal from daily wear and tear.”

It was 2007 or 2008 when I began to wake with a stiff spine. This, I couldn’t dismiss. Pain, well, I’d had that for years. But stiffness? Not being able to bend properly or get out of bed easily? I was only in my late twenties – this couldn’t be normal.

It wasn’t long after that, those months of relying on a hot shower and Ibuprofen every morning to get me moving, before more symptoms began – low grade fever, extreme fatigue, my hips catching and giving out on me, pain in my feet and wrists, limping when I walked too far. And it felt like if I could get something, I did. I had shingles, then bronchitis. I coughed till I vomited and my ribs were so sore I felt like I’d been in a car accident.

In fall 2009 I had my first autoimmune flare. I didn’t know what was going on, but knew I felt terrible, and when it happened again the next spring, I began to think the word ‘arthritis.’ It was my older daughter’s Kindergarten school year. I was miserable and pushing through symptoms and fatigue every day to function and raise my daughters.

It was June 2010 when a chiropractor I was seeing said ‘Ankylosing Spondylitis.’

Later that month, my primary care doctor listened to me for 20 minutes before saying, “Definitely something autoimmune. Could be Rheumatoid Arthritis, could be Ankylosing Spondylitis.” She ordered the blood test for the gene HLA-B27, a gene strongly associated with spondyloarthropathies, the family of diseases that include Ankylosing Spondylitis.

I tested positive for the gene.

In September, a rheumatologist spent two full hours with me, and diagnosed me with AS.

Women do indeed get Ankylosing Spondylitis.

I spent a good portion of 2011 worrying about my mobility and wondering if I would eventually need hip replacements. I had to quit my outdoor walking routine. It was by far too hard on my joints. I still miss it.

I’ve gotten a little better with treatment, but two years have passed now, two years last Saturday since I was diagnosed, and I’m also worse in some ways. That’s the nature of this disease – to progress, to debilitate.

I have pain every day. I don’t know what pain-free feels like, because it’s been too long since I’ve experienced it.  There are many mornings, that I wake up in so much pain, I can’t even sort out where all it’s coming from. It hurts to walk most of the time. Sometimes it’s more severe and sometimes less, but the fatigue is always present, and if I can manage to function through the day, I will almost always need to crash after my girls go to bed.

My spine is in constant pain, sometimes I can’t sleep due to pain, and sometimes I have nerve pain down my right leg.

I’m thankful every day for many things that make my life easier and more comfortable. Hot showers, electric heating pads, knee braces, arthritis gloves, clogs that alleviate arthritis pain in my feet, slippers, my bed and recliner, memory foam pillows, and once in a while, my cane.

I’m in my early thirties and this is my life. It’s not the most difficult physical existence by any stretch, and while it can be life threatening, it isn’t often that AS is a fatal disease. I’m thankful for all of that. I’m thankful for what I can do.

I still worry about my future. I wonder if I’ll be in a wheelchair at my daughters’ graduations; if I’ll have my hips replaced by the time they get married.

I wonder if my spine will fuse.

I’ll tell you what helps the most. More than pain meds or physical therapy or resting or mobility aids, GRATITUDE helps.

My discovery of listing what I’m thankful for and its ability to create joy and happiness occurred years before I got sick and years before I ‘met’ Sara Frankl online. But in the months waiting for diagnosis, many sleepless nights I turned to her blog for wisdom and inspiration. And what she wrote, again and again, was that joy is a choice and life is a gift, and that even in the pain, she would choose joy.

I’m thankful for the gift of Sara Frankl. And today, one year since her death, I used my courage to go see a new doctor and try to fight for better quality of life so I can shine brighter and have more energy to leave my own legacy.


--------------------------------------------
You can read Sara's blog at: gitzengirl.blogspot.com

Joy in the Brave

I’m going home from a nearly three week long trip. I’ve traveled from the west coast to the east coast, from the Pacific to the Atlantic, by plane, car, and ship, and I’ve learned some things about myself and about traveling. I’ve learned some things about life. And it’s good.

I’ve been so eager to share with you all. You strong women who battle hard things on a daily basis and maintain your joy and humor through it all.

You whose child has autism, you who has constant dizziness, you who lost your mother and is still learning to navigate life without her, you who is fighting cancer they say may be terminal, you who lives with severe daily pain, you who fights the urge to starve your body or overeat, you in a stressful workplace;  you who lost a friend, you who is a single mother while your husband is deployed, you who grieves the loss of a child, you who is climbing the mountains of your own war.

You the collective brave.

You are strong women, and it’s my humble pleasure to hear from you, to learn your stories and trade encouragement.

I’m writing this post on a seven hour flight. My daughter is beside me, her arms embracing two stuffed bunnies and a cat. I sip cranberry juice and peer out the window at clouds beneath the wings of this mighty metal bird.

I think of each of you and your stories, and I am grateful. I’m grateful to have gotten to know you, and grateful for your emails and support of Live Art.fully, my cyberspace corner. Live Art.fully is like a little cottage where you’re welcome. You’re invited in for warm muffins and hot drinks in the winter, and lemonade in the summer. You’re welcome to recharge here and tell me your story, and I’ll tell you mine too. As Pooh and Piglet agree, “It’s friendlier with two.”

As I told you in my Attraversiamo post, traveling hasn’t been a strength of mine. I’m not afraid. I know people who suffer from anxiety when flying or driving, and that isn’t my problem, it’s just that I feel off-kilter and unbalanced when away from home and what’s familiar. The last few times we flew, I had a baby along each time, and my idiosyncrasies and weaknesses became amplified by jet lag, time zone changes, and sleep deprivation from a teething baby or a toddler unfamiliar with her new sleeping quarters.

To tell the truth, I was afraid of my own ability to handle traveling so far, for so long, staying in a house with so many people and not having the solitude I’m used to. I was worried about my pain levels and whether I’d be too ill to manage two cross country flights. I didn’t want to be problem for those around me. I didn’t want to be miserable. I didn’t want to make a scene.

It’s with relief and deep gratitude that I share that the trip went well. AS didn’t stay home; I still had pain every day. I still had to manage stiffness and fatigue. Some of that was worse, given the beds that weren’t my own. It was hot where we went, at least compared to what I’m used to, and muggy. I was thankful for air conditioning and ceiling fans in the rental house we stayed in with my husband’s family.

We ate out and cooked in, and rode the ferry and swam in the ocean, and stayed inside out of the mid-day heat some days. We got grape slushies and ice cream, and visited the marina to look at the water and boats, and walked the island and looked in shops.

One day, our last full day on the island, my sisters-in-law and mother-in-law and I went shopping. My knees were bothering me and I was running low on energy. I found a public hammock and “hung out” between stores. Only on an island can you do that, a shopping mall just doesn’t have that same perk!

After shopping we found a restaurant screened in like a porch.

“Four for dinner?” asked the hostess.

“Four for dessert,” we replied, giggling.

It was a special time, sipping our decaf coffee and laughing. We ordered all four desserts on the menu and split them each in quarters to share. It was the day after International Chocolate Day and we celebrated aptly with mocha swirl cheesecake, chocolate chess pie, and chocolate pecan fudge cake. It was glorious, the hours of being with women and only women.

“It’s so much easier [browsing shops] without the kids,” I commented to my sister-in-law.

“I know,” she replied, "I haven’t had to tell you to behave yourself even once.”

I got to meet nieces and nephews, and get to know my husband’s siblings better. I loved that.

I wore a swimsuit and went without makeup and got in the water and did many things outside my comfort zone. And you know what I realized? I realized that there is joy in the act of being brave. Not just relief in getting through it, not just pride in having done it, but JOY on the other side of the fear. You might get knocked over by a wave and get water up your nose and scrape your knees on the abrasive Atlantic ocean floor, but when you come up out of the water, you haven’t drowned. You’ve survived.

If you pass by your chance to be brave, you may miss the unexpected joy that is waiting for you.

Some of this may seem trivial, but another thing I realized is that fear is fear. My fears and discomforts may be vastly different than yours, but they are no less scary and uncomfortable. When I rise above my fears, I am being brave, even if the same thing would not require courage for you. It’s good and right that we celebrate our victories, big or small.

There were hard times and good times, magical moments and moments I was desperate to go home and could not.  It was a long journey. But I found my joy on the other side of being brave, and that was perhaps the most unexpected gift of this trip. It was my gift by the sea.

What's Worth Doing?

A friend posted a quote by Brene Brown today:

"What's worth doing even if I fail?"

Isn't that a wonderful question?

Here's what I decided.

Even if I fail by some standards, completion is success. Not giving up is success. Being brave is success. Trying new things and taking creative risks is success.

Failure is so RELATIVE.

I want to finish my book.

I want to be a wonderful mother.

I want to be a loyal friend.

I want to have a beautiful spirit.

I want to keep building Live Art.fully.

I want to FLY in my own way.

I want to bear pain and illness with strength.

I want to always be Brave Enough.

I never want to stop growing.

I want to inspire.

What do you want? What's worth the effort to you? How do you define success?

Attraversiamo: On Traveling with Chronic Illness

Attraversiamo. In Italian, it means "cross over."

That's exactly what we did last week. My husband and our two girls and I, we crossed over the country.

We traveled from sea to sea; from the northwest to the southeast. We started  in a region of tall, green trees, rain, and coffee and ended in a region of bugs, humidity, and sweet tea.

This journey far surpasses any I have taken in years. It consisted of two cross-country flights, a rental car, two nights of hotel stays, two weeks of beach house stay, and two days of driving.

Even before chronic illness reared its ugly head, traveling was not my strong suit. I do well with home, with the familiar.

Months ago, when we first began planning this trip, I began trying to change my way of thinking. Instead of thinking of worst case scenarios that could happen while traveling, I began to consciously look forward to specific things -- the beautiful pictures I would take, my girls' excitement to see a new place, getting to know my nieces and nephew, and spending time with my husband's family. I allowed myself some new stickers and papercrafting supplies to document our travels. Instead of feeling stressed, I tried to change that feeling to excitement.

It didn't completely change my normal ways of thinking about travel, but it helped.

In the airport, being pushed in a wheelchair to save my hips and knees, I remembered the reason for this journey. Gorgeous piano music in the airport was playing, "It is Well With My Soul."

In the middle of a long day of travel, somewhere in Nevada, I hit the wall. Going on about 1.5 hours of sleep the night before, I was exhausted, hurting, and still had hours to go before I could find a comfortable chair or a place to lie down. I began to cry and felt myself slipping into my old ways of thinking: I'm not good at traveling, I can't do this, I should've stayed home, I want to go home.

I went in the ladies' room and cried for a few minutes in a stall, and then I dried my eyes and reached way deep within for strength and inspiration. I remembered that I am Brave Enough, and we trekked on.

And we made it. Here I am in the land of bugs and sweet tea; on an island with beautiful warm water.

Here I am, crossed over.
I call it a gift -- the opportunity to do this trip. I call it an adventure. And for myself, I call it brave.

Attraversiamo -- how will you "cross over" your fear?

Fighting to Thrive

Have you ever felt yourself drowning in the chronic pain & illness sea?

That's where I've been the last few months. The fatigue that accompanies my disease had passed the point of ridiculous. I was so exhausted that I could barely function.

Honestly, the whole summer has been quite difficult in many ways.

But there is light now...

I finally kicked my way to the surface enough to call my primary doctor.

I treaded the proverbial water while I had blood drawn for labs and waited for the results that offered hope... my thyroid, which hasn't been behaving itself for at least two years now, had acted up in a new way.

Hope came in the form of a new thyroid supplement. So now every morning I swallow two tiny pills to help my thyroid know to do its job.

Hope came in the form of a call that said, "The doctor is happy to see you. He can see you in September."

So there's treatment now, and there's new options and expertise on the horizon.

I don't feel quite so much like I'm drowning now.

This is for you: the one who feels she's drowning. This is to say, "Please keep fighting."

You have a beautiful life to live. You are a unique gift to the world. So please keep fighting to live your best possible life.

That's what I'm going to do. And we'll do it together.

Lessons from the Olympic Games

This week in London, the USA Women's gymnastics team (comprised of five teenagers, two competing injured) won the Team Gold. This is an achievement only secured once before for the United States, in 1996, by a group of women dubbed the "Magnificent Seven."

I have been a gymnastics fan since I was a little girl, before I broke my arm so badly I had to have surgery and three pins and never could do a pull up or push up or cartwheel again, and before I grew to my full height of 5'11" (yes, almost 6 feet).

Obviously with my height alone, a trip to the Olympics to compete in gymnastics was not in my future, but when I was a little girl, I didn't know that. I just knew about a little girl named Nadia who had won SEVEN perfect 10.0s in the 1976 Montreal Olympic Games.

I knew about Nadia and I knew about Mary Lou Retton, and my neighbor and I would spend hours practicing our "gymnastics" (really, just a very poor impersonation, as I could not flip with my post-fractured arm). I was always Nadia. She was always Mary Lou.

Schools would come to our school on their gymnastics tours and put on stunning performances. Afterward, filled with adrenaline, I would join the other inspired kids on the mat and invariably twist an ankle or hurt myself in some way.

I didn't know that I would grow to be far, far too tall to be an Olympic gymnast.
I didn't know that my joints were hypermobile, thus all the sprained ankles.
I didn't know that I would develop Ankylosing Spondylitis and all the landings and tricks done in gymnastics wouldn't work for my body.

I just knew I was inspired.

Watching the Olympic Games this summer, I haven't felt the urge to try a somersault or a cartwheel. I haven't twisted an ankle trying to be the next Nadia Comaneci. But I have been more inspired than ever.

Amazing themes play out in the Olympic Games. Themes like hard work, preparation, sacrifice, determination, courage, excellence, goal-setting, strength, overcoming obstacles, working as a team, doing your best, winning and losing graciously, and getting back up and finishing when you fall.

Watching the Fab Five (USA's women's gymnastics team), I have been inspired by all five team members.

McKayla Maroney is one of the world's best vaulters. She was chosen for the team specifically for her vault ability, and competed for Team USA only in the vault event. Tuesday she vaulted impeccably, with a broken toe, earning a near perfect score. Thanks McKayla, for demonstrating mind over matter. You competed with pain and injury, and gave it your all. You smiled and cheered on your teammates with heart and sincerity. Thanks also for reminding me that even if you can't do it all, you can do what you do with excellence!

As defending world champion, Jordyn Wieber went to London with perhaps more pressure on her and more expectations than the other four girls on the team. Competing with a bruised foot, Jordyn, like McKayla, gave it her all. And when Jordyn lost her chance to compete for the individual All-Around title, she cried it out and then promptly dried her eyes and set her sights on what still mattered: leading her team in the competition for the team medal. She did her job fabulously, sticking her vault and performing with excellence. Jordyn reminds me that sometimes as an individual, life doesn't go the way we plan, but we get up and continue to work for the good of those around us.

I've been reminded that being a team means working together, and supporting each other. Being a team means fighting for the common good, and sticking together.

What I love about the Olympics is the reminder that we all have goals and dreams and battles, and athletes or not, we can strive for excellence, even with limitations, and we can use character through the defeats, falls, and victories.

Thank you, Olympians, for inspiring us!

The "Chronic" I Want to Be

We had a big weekend, and Sunday afternoon I collapsed into rest mode. I thought I'd be okay if I got off my joints for several hours, but Monday I was even worse. My knees were on fire, my hip was in such pain I was nauseated, and I had no energy. Some with lupus and other autoimmune diseases call themselves "spoonies," in reference to the Spoon Theory written by lupus sufferer Christine Miserandino. In the theory, she attempts to explain to a friend how energy works when you have chronic fatigue caused by the battle of chronic inflammation and pain in a body like ours. She explains that at the beginning of every day you are given a handful of spoons and each task takes one or more spoons. Some days, she elaborates, you wake with only one or two spoons. It's those days that are killers, because you have to make deliberate choices about what's most important. Do you want to exchange your one "spoon" of energy for a shower? Or would you rather use it for running a load of laundry so your family has clean clothes to wear? 

Let's just say that Monday and Tuesday I was running on zero spoons. I rested as much as I could, around taking care of my daughters, and tried to fight the mama-guilt and the worry that comes with flares. I coached myself that a flare does not necessarily mean "new normal." Last winter, for example, I was in a long flare. I began having new symptoms like nerve pain down my leg. I got a cane and used it off and on. I spent a lot of time in my bed. I developed a new level of appreciation for things like electric blankets, wedge pillows to prop myself up, pajamas and pretty-smelling lotion. I worried a lot that my disease, Ankylosing Spondylitis, was progressing and that this would be my "new normal."

But finally, eventually, the flare eased, and I was back to my "old normal" -- battling pain, stiffness, low-grade fevers, and fatigue regularly, never feeling "good," but walking without the cane, rarely having the nerve pain, and not in bed nearly as much.

This week I worried. I worried that I, in this condition, am not Good Enough. I worried that my fatigue might overpower my will power, and wondered what life would be like with never ending Zero Spoon days. I worried that I would not be a good enough mama, a good enough (homeschool) teacher, a good enough anything.

Wednesday I was still exhausted and hurting and limping on that hip and those knees, but I had more spoons in my bouquet and I was able to run a bit of laundry and vacuum and tidy up the house. We had dinner with friends, although I didn't have spoons left to apply makeup or do anything with my hair or change out of comfy lounge clothes.

Today I made it out of the house for almost three hours. I took my girls to the park to enjoy the warm sunny day.

We did a couple of errands including picking up food for our kitten Mitzy, and checking out armloads of books and DVDs from the children's section of the library.

We came home and I finally made good on something I've been wanting to do with my girls for a couple of weeks: bake cookies.

Natalie helped me unwrap sticks of butter. Both girls helped me roll dough in sugar. We baked till barely golden brown and enjoyed a couple with squaty glasses of milk.

We waited till they all cooled and filled up our new-to-us adorable Goodwill cookie jar adorned with a kitty, bunny, bear and mouse.

By the time the oven was turned off, my spine was screaming in pain. I was almost cross-eyed from fatigue, but so happy to have mastered a day the Old Me did regularly. So happy to make memories of park fun and cookie baking with my girls.

I don't know what tomorrow holds. I don't know if at some point, the New Normal I fear will catch up with me. But I know that today we lived and loved and did what we could. I also know that without resting for a few days this week, I wouldn't have been able to do today. So this isn't a post to say, "Go ahead and use the energy you don't have because the memories will make up for it." No. We must become wise. We must know our bodies, know our diseases, know our triggers, and know when the pay off is worth it and when it's not.

Today I'm thankful for the energy to bake cookies with two little girls who call me Mama. And if I don't have any energy tomorrow, I will try to remember not to worry. I will do what I must and rest when I can and be thankful for two little girls who cuddle with me when I'm "down" for the day.

I will keep working on releasing expectations, and separating my sense of worth from what I am able to accomplish. Spoons or no spoons, I will be aware of what I am grateful for. Because I fully believe that what we are grateful for becomes enough, and gratitude creates the joy and peace we crave.

When all is said and done, I want people who knew me to say that more than chronically ill, more than chronically in pain, I was chronically grateful.

That's the kind of "chronic" I want to be.

Traversing the {Chronic} Trail

“The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.” {Helen Keller}

I read other blogs that chronicle personal lives of chronic illness, and they are soothing. I am not alone. I find myself inspired by reading how others manage their conditions, especially when they do so with great intention, deep thought, and positivity. 

So why am I afraid to write too much about my own condition? As human beings, aren't we longing for connection, for stories and accounts of what it's like for someone else?

I am afraid because I do not want to come across as dramatic or negative. I want to write the truth of what is, and quilt it together with inspiration and insights into hardship and suffering, comfort and prevailing joy. I want to show you my reality just as fact, not for attention or as an outlet for whining.

I have been struggling lately with this desire to express my experience. How do I do it in a way that is real and true and still inspirational?

How can I show you my world, through my eyes, so that you see (as I so often do) that hardships serve a tremendous purpose of bringing into focus what is important, and of amplifying the simple into a peace and joy that is enough?

I want to write to show those just becoming ill, just going through the diagnosis process, that there is beauty in a "chronic" life. I want to leave a map. And not just a map, but a sturdy pair of hiking boots that don't blister, and a bottle of cold water, and some hearty trail mix. I want to cheer you on up those hills so that you can see the beautiful view just over the top.

I'd love your input into how best to accomplish those goals.

The Other Kind of Teenager: Thoughts on Raising Great Kids

This evening on the way home from my daughter Hannah's ballet class, we stopped for a few groceries. The couple behind us in line were discussing a teenage girl. "If she was mine, I'd take her phone away and make sure she was so busy she had no time for boys."

Their tone implied they had little respect for teenagers.

We put our groceries on the conveyor belt, and Hannah moved our things forward and put a divider up so the people behind us could add their groceries. The expressions on their faces was priceless. "Wow!" They exclaimed. "That was nice!"

The lady asked me how old Hannah is.

"She's eight."

The lady's reply was predictable and disappointing. "Enjoy her now while she's still sweet."

There was a beat and then Hannah politely stated, "Actually, we think I'm going to be nice all along. I'm going to be the other kind of teenager."

Their faces again looked stunned. They then told her they thought that was wonderful.

Please don't underestimate the power you have, whether you're a parent or not, of setting kids up to be great teenagers and adults, or setting them up to believe their roles as teens is to be impossible, rude, and irresponsible.

As a society, it's time to change the message we're sending to our youth. Today's kids are tomorrow's law-makers, teachers, physicians, social workers, scientists, nurses, parents, and much much more.

Let's start with the kids in our own homes and communities. Let's begin instilling this message: "I see so much potential in you. I know you are going to go far and do great things. I'm excited to see all of the compassion and kindness you will give the world. You have purpose."

True North

Ribbons of the new and unexpected wind in and around normal rhythms. Life isn't static, and as such, you would think I would learn to expect the unexpected. Somehow change still catches me off guard.

I find myself without a map right now. In a place I haven't been before. Perhaps you find yourself in a similar place.

Disoriented, I sit on the edge of my bed at night and journal, determined to use my compass to find true north. My husband walks in and snaps a picture as he says, "Look at you live artfully." {It's a bit of a joke around here.}

I'm a chatterbox, but very much an introvert. A few years ago I dubbed myself an "Expressive Introvert." I have a deep inner thought life. I process everything. Then I have to express it, somehow, in order to fully process my experience.

Change is hard for introverts. I am a creature who cherishes and tries to protect stability. Even when my life looks the same from the outside, if there are elements of change within, I feel it like waves rippling beneath a sailboat.

So it's vital for me to have a true north I can find when I feel blown about on rippling tides or rough seas.

I'm thinking a lot these days about my true north. What that is. What points me right-side-up, feeds me, returns me to what I know to be true about myself and life. Maybe this resonates with you. Maybe, like me, you just needed the words for this feeling so that you could begin identifying all of the things, people, places, beliefs that make up your compass.

Find your true north.

DaySpring Oilcloth Tote: Product Review

The bag rode in the back seat to Grammy's house, toting Veggie Tales DVDs, changes of clothes for the girls, water color paints and sketch books, a storybook, and things I needed for a day away from home. It held an armload -- the perfect amount of comfort and activities for several hours at my parents' house.

The bag rode at my feet as I sat in the passenger seat, the "Flight Attendant." It held my wallet, phone, lipstick, eyeglasses, contact case & solution, books for my girls in the backseat. It held an extra pair of shoes in case my feet flared, PJs for the girls in case it was close to bedtime when we were done shopping in the city.

The bag came on our bookstore/coffee shop date, packed with two journals, a book, art supplies, my phone, my wallet, and a comfortable outfit and other things in case I got cold or super uncomfortable.

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The Hope for the Best oilcloth tote by DaySpring is beautiful. The message applies to my life in more than one way right now, and I find it encouraging. Hope has been my theme throughout difficult times in my life, and is even a nickname given to me by one of my friends. I couldn't wait to receive the Hope bag in the mail to review, and was more than pleased when I took it out of the box.

It's soft, yet sturdy, roomy with a strong magnet closure, the straps are long enough to carry comfortably on my shoulder and feel like soft leather. The colors are beautiful and the lining is pink and fun. There are several pockets inside, including cell phone pockets and a zipper pocket big enough for lipstick, change, medications, or whatever you might need to carry with you. 

I received an additional bag to give to a friend. I gifted it to a friend who recently had a birthday. She uses totes all the time for grocery shopping and toting books from place to place, so I was sure she would put it to good use.

The bag would be perfect for a trip to the beach -- throw in towels, sunscreen, snacks & drinks, a good book, and sunglasses. When you get home, it will be easy to wipe clean.

Our family is going on vacation in September and this bag will definitely be coming along! As a mom, I find it the perfect size.

I can think of a dozen uses for this bag, and have carried nothing else since receiving it. I am truly delighted with it and would order more as gifts or for myself. 

Check out the other oilcloth and jute totes by DaySpring here: http://www.dayspring.com/search/?keywords=oil%20cloth

DaySpring is offering a Buy 2, get the 3rd free deal on their beautiful bags through the month of June. Pick up one for you and gifts for friends!

*I received this complimentary bag from DaySpring in exchange for my honest review. 

Journey to Brave: The Realities of Daily Pain

{Art journaling by Jennifer LeBlanc 2012. All Rights Reserved.}

Pain is an opportunity to practice courage.

People have told me how amazed they are that I continue smiling through the pain. That's not always the case, and this picture was taken to prove that. I post it with trepidation. It's not pretty. Neither is severe pain or living with it.

The picture on the left was taken on my way to church with my family. This is what people often see. I'm done up and out. I look 'normal.' I am likely in significant pain even when I look like the left picture. What people don't see is the effort it takes to get the pain under control and get myself looking like this and get out the door. The picture on the right is what people rarely see. This was taken the other night while I was in a severe episode of Costochondritis, a frequent symptom I have, when the inflammation flares in my sternum, rib cage and chest. This particular attack was my spine, ribs, chest, sternum, all the way around, front, back and sides. I literally felt "IN pain." I was inside of it and it held me in its clutches as if I were a bird in a cage. Costochondritis is commonly described as feeling like you are having a heart attack or an elephant is sitting on your chest. It's incredibly painful and makes every breath painful as well.

If it helps you to understand better, check out this image.

The chest is made up of many, many bones and joints. I could feel every single one.

I do not write this for your sympathy or pity. I do not write this to complain. My reason for posting this is to help raise awareness. Because I am just one of the mass of people out there living with daily pain. 

If you are one of those with chronic pain, I write this for you. I write this to say, "You are not alone!" 

{My daughter drew this picture to illustrate an elephant on Mommy's chest}

Pain takes its toll, especially severe pain. It is difficult, and sometimes not possible, to live a normal life of responsibilities and activities when pain is part of your daily reality. 

Please understand that we are not lazy if we sleep more than you do. We are not "lucky" to have frequent rest times. I cannot tell you how frustrating it is for me, as a person who thrives on being productive, to have to rest while life all around me doesn't stop.

And because life doesn't stop for chronic pain and illness, as it might temporarily pause for those who take a sick day from work, I have to learn what I can and cannot manage. I have pain every day, 24/7. I honestly can no longer remember what pain-free feels like. So please understand if I cannot watch your kids, lead out in activities or events, or if I have to cancel our afternoon get-together or play date.

I cannot express what a gift it is when people don't judge. When you say, "I'd love to get together but please feel free to cancel if you're having a bad day." When you're at the store and you text me to see if I need something picked up. These are real life examples of things my friends have done for me in the last week. You are a gift to me. Your understanding, or willingness to try to understand, is not something I take for granted. Thank you!

I firmly believe that if you just look for them, there will always be more blessings than struggles.

Did You Miss It?: (in)RL Conference Materials

If you missed the inRL virtual conference, I have great news! Dayspring and (in)courage have teamed up to make the event's videos and workbook available for sale. Through the end of this month, you can save 50%. 

The videos alone are worth every penny, not to mention the study booklet. I know I will watch the videos again and again, even though I attended the event.

These videos include authors and bloggers including Ann Voskamp, Holley Gerth, Lisa-Jo, and many, many more. Also, the very touching 30 minute video tribute to Sara Frankl, our friend who lived bravely despite severe pain and limitations and left a legacy of Choosing Joy, is included.

Now through the end of the month, save 50% using code INRL50.

I highly recommend you purchase these materials, enjoy them, and share them with your Bible Study girls, church library, mother, aunt, sister, and all of your friends.

Many Blessings: Looking Back and Looking Forward

I remember shopping for rubber stamps in the months before my diagnosis with Ankylosing Spondylitis in 2010. I wandered the aisles of Craft Warehouse and selected a package that inspired me. The stamps were of cherry blossoms and soaring birds, with words like {Many Blessings} and Bloom and I decided right then and there in that aisle that I would do just that.

I decided that no matter what came with my health and my joints and ability to walk, I would keep growing and live joyfully and I would try to live my life in such a way that people watching could be inspired.

Because we all have battles, don't we?

Today I was doing some journaling. I got out some stamps and ink pads, and stamped the words from that package of stamps on heavy ivory pages and I remembered that time so clearly. I remembered the fear and the worry, the new symptoms that popped up frequently (autoimmunity is like a circus, you just never know what new and colorful thing will surprise you next), the months between when my primary care doctor said she was certain I had AS and 3-4 months later when my rheumatologist confirmed the diagnosis.

I remembered reading posts by Sara Frankl, and being strengthened by her attitude of daily joy regardless of the circumstances. I filled myself that summer, reading inspiring things, feasting on outdoor beauty, and journaling my own feelings and declarations that no matter what came, I would grow and I would fight and I would live my best life.

For me, it's important to look back and remember the milestones. It's important to regularly think about the choice and commitment I've made to find a way to weave beauty, inspiration, courage and my dreams into my reality.

I'm thankful for books and blog posts that have kept me inspired. I'm thankful for the example of how others fight their battles.

I feel buoyed by the realization that I have done the best I could so far, and that I have kept a joyful, thankful outlook. I'm thankful for everything and everyone and the One who have helped me do that. I'm also thankful for grace when I can't fight for a day or two and need some time to just grieve what the reality is.

I choose again today to continue to live with as much courage and strength as I can muster, to offer grace to those around me and to myself when needed, to use my words to heal and uplift, not to harm.

I choose again to keep fighting to make my dreams reality, even when my reality is heavy and hard.

The Friend in My Pocket

"Make new friends and keep the old,

One is silver and the other gold."

She is a new friend that feels "old" in the best possible way. A treasure, precious; gold.

I tuck her in my pocket and carry her around with me throughout the day -- sometimes almost literally -- our words connecting our hearts via texts from iPhone to iPhone carried in pocket and purse.

I text to report on what my body is doing today -- maybe hips are limping, maybe a spine is stiffened, maybe hands are swollen. I tell her what my heart is feeling -- maybe stressed and maybe blessed. Often, as authentic life goes, a measure of each. I tell her what my girls are doing, what our day is holding.

She tells me things back.

One of my kids acts out in public and I go home, deflated. It never ceases to amaze me how my girls' behavior can thrill me or undo me.

I text her, my phone making a little whoosh as the message of "My day just went south" zips its way through mysterious channels of technology to ding into her phone.

I am returning Redbox DVDs, comfy in velour pants and ballet flats, comforted by the silence of no children on this errand; inspired by the fresh air and lighting of dusk when my phone alerts me of her reply.

I hold my breath as I read in my parked car. She is new after all. Will she judge my motherhood; my babes (grown in the protection of my body, in the space beneath my heart)? My babes I've spent nearly 24/7 with since their birth? Motherhood is of utmost importance to me -- the desire to put in the time, do the work, give it my best (which so often feels like not good enough).

She says the perfect things, her words a balm to a bruised Mama-soul.

Her message lightens my load as she volunteers to help carry it. I find comfort in her understanding and non-judgment.

She is new, but she is gold.

Thankful for a pocket friend tonight.

For the Woman Grieving Her Baby

In 2005 I lost a child at 10 weeks gestation. I had no symptoms of anything going wrong. I went in for an ultrasound and discovered that our baby had no heartbeat. They told me this was called "Missed Miscarriage." It was a type of miscarriage I didn't know existed.

In the years since, similar things and worse have happened to women I know -- neighbors, college roommates, childhood friends. And I've learned that no matter how much I hurt for them, our experiences are not the same. I want to help and I want to say the right things -- ideally one exactly right thing that will bring comfort or an ounce of peace.

Sometimes I plan tea parties in my mind. I daydream an event in my home where I would gather all these women on my couches and tuck warm blankets around them. My home would be clean. The coffee table would hold boxes of the softest tissue. My kitchen island would offer cookies and fresh fruit and tea and coffee and hot cocoa. Big, big mugs to hold enough hot liquid to help swallow down each other's stories; to wash away the hurt.

I would design them all a journal. I would hand it to them, wrapped in tissue paper and string, with a sprig of Forget-Me-Nots. I would say, "It's okay to remember. It's okay to process the loss of your sweet baby, your child, until you have nothing else to say. Until the brutal mourning transitions into a fragile, yet beautiful butterfly that flies free and simply lands on you from time to time, a reminder."

I would lend them my books on miscarriage, stillbirth and infant loss. I would offer anything at all to ease the grief.

Most of all, I would say, "Please don't think you are alone."

I would say, "Find safe people to talk about your baby with. Find people who will listen and not try to minimize what you're going through."

I would say, "People will tell you, 'At least you have your other child(ren).' Yes, that's true, you do. You have someone else to get out of bed for and to pour your love into and to hold when your arms throb with emptiness. But children aren't replaceable. Your living children do not replace the unique bond you formed with the one who died. You have every right to remember and grieve and miss the one who isn't here. And you have every right to love the lost and carry the memory of your sweet baby in your heart, even though your arms cannot do the holding."

I would say, "Grief has its own timetable. Even when you think you've already grieved your loss, it may come back. It may hit harder two years down the road than when it first happened."

I would say, "Miscarriage is not a heavy period! Miscarriage is the death of a living, growing baby. Your baby." 

I would say, "In the darkest pockets of sorrow, you may feel you're going crazy. Grief and madness are not the same, but on this journey, they may feel that way. You will survive this. However, if at any time you have thoughts of hurting yourself or others, or if you begin to make plans or fantasize about your own death; if you can't get out of bed for days on end, please tell someone you trust. Please say the words, 'I need help.'"

As much as it's cliche and as much as you might not want to hear it right now, I would tell you, "It gets better. I used to think that perhaps those further down the path of loss -- further healed -- hadn't had as strong of a connection to their baby as I had to my Jordan. But no matter how long it takes, no matter how many times the grief comes rolling back in -- the strongest ocean waves threatening to suck you under -- it will get better."

You will always remember. You will hold that baby in your heart and carry them your whole life. You will not forget. But eventually, after enough tears and hard work to process this huge, huge hole in your life, the memory of your baby will not bring pain. It will bring a tender, sweet joy.

It's okay to do exactly what you feel will bring you healing. It's okay to write down what you're feeling and not mince words. It's okay to crouch in your closet and sob. It's okay to find the innermost part of the forest and scream. It's okay to sleep with a teddy bear when your arms feel so empty they might detach from your body. It's okay, friend, to do what you intuitively know will help.

Maybe that's planning a ceremony. Maybe that's a memorial service. Maybe that's making messy art. Maybe that's buying a baby blanket even though you have no baby to swaddle. Maybe that's starting a blog. Maybe that's training for a marathon. Maybe that's raising money for organizations that fight for children. Maybe that's sponsoring a child.

In our family, there's a day every fall that we call Jordan Day. It's not a birthday and it's not a celebration, but we make a special meal -- always Mexican food, as that's what I craved when I was carrying Jordan -- and we light candles and eat as a family, and we remember and acknowledge the missing member of our family.

Healing will come. You'll never forget. You'll never feel it didn't happen. But healing will come. It will leave a scar, but you will heal.

Until you heal, please know I am crying tears for you and with you. Because I know the depth of my love and longing for Jordan, I can imagine the depth of yours. So when you need me, let me know. I will walk this path with you.

You are not alone.