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.


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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!