My Word for the New Year {2013}

There's a lot of me that has been altered through the past few years; taken or temporarily taken over by chronic illness and bouts of severe, unrelenting pain. It snatches bits of sanity, social life, creativity, inspiration, it takes the dreams, the goals, the best parts of self, even as I've fought to retain them.

This last fall I changed my treatment plan, and began feeling significantly better just over a month ago. 2012 closed with me feeling alternately battered and vibrant. Battered by much of what happened in 2012, and vibrant because the relief leaves me breathless, weightless, floating... so much weight off my shoulders.

I've chosen a Word of the Year for the past three years. In 2010 I chose NEST to remind myself of my priority of building a sacred, safe, nurturing shelter for my young daughters and our family. In 2011, fighting Ankylosing Spondylitis in earnest, I chose STILL to remind myself to be still and know that God had a plan, to be still and rest, that no matter what happened in my future, I was still God's and I still had purpose. In 2012, yearning to not let life pass me by regardless of a life with chronic illness, I chose AWAKE. I wanted to focus on staying awake to life, to dreams, to opportunities, and to the everyday moments of grace and joy. 

Awake was a word of mixed results. I gave it a valiant effort -- I traveled cross-country with my family for 2.5 weeks, I attended a writing conference, I joined a writing critique group, I focused on my book, I enrolled my girls in ballet class, and saw a passion for dance awaken in Hannah.

There were also times that Awake seemed a bad joke. Severe fatigue and pain dragging me under water, at times making it impossible to join in to life. The last few months of 2012 were particularly difficult and grueling. But as the saying goes, the darkest was just before dawn, and less than a week after Thanksgiving I began to awake once more: ideas, more energy, less pain, more smiles and more laughter, and simply feeling more like myself again.

I'm still battling AS, but it's not as big of a foe right now. So I'm going into 2013 inspired to RECLAIM the me that chronic challenges threatened.

I want to Reclaim parts of myself that were put on the back burner while so very ill. I want to write, I want to reclaim stability in our home, reclaim the dreams and the goals, reclaim ability vs. disability, reclaim so very many things.

I know that I may continue to improve, or that my pain may climb back up the scale along with my fatigue. If that happens, I will fight again, and I will give myself the gift of grace and understanding, knowing that I have always done my best, no matter the degree of difficulty.

I want to claim space for myself, and claim physical space for writing in our home. I did that today, creating a little corner of my own with a rolltop desk and my writing supplies. I organized my art supplies and put stacks of notecards in the cubbies of the desk.

I am reclaiming the precious relationships I have with my daughters, now that I once again have the ability to be emotionally present in our conversations and one-on-one time, not sequestered away from them by the barrier of pain I couldn't ignore.

I feel inspired and intentional going into this new year. It will be my mission to reclaim my identity apart from chronic illness. 

Reclaim: to rescue from an undesirable state; to restore to a precious natural state.

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.