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.