Willingness to Grow

"Allow events to change you:
You have to be willing to grow.
Growth is different from something that happens to you.
You produce it.
You live it.
The prerequisites for growth:
the openness to experience events
and the willingness
to be changed by them."
 {Bruce Man}

On Grandpa and Things That Don't Come Easy

It's a cold and rustly February night and I lie in bed. I am sandwiched between heating pads, swaddled in ivory flannel pajamas and a fleece throw. I wear glasses and my knees rest on two pillows. I hear the constant trickle of the fish aquarium and the fainter, distant hum of the bathroom fan. I still and concentrate. Other than occasional rumblings of traffic, this is all I hear. I've gone to bed early, a hip throbbing and a mind too busy for such tired eyes.

Today I got a cane.

I think about canes and I remember Grandpa Jim. I remember his cane propped here and there; hanging from the handle of the Safeway cart. But he was in his eighties. I am exactly half a century younger than he was when he died, six years and one day ago.

I miss him. I miss his Eeyore personality and his big knuckles. I miss our chats which were slow and speed-bumped. I would sit and know that there is value in things that don't come easy. I miss his world of blue.

So I am 32 and I own a cane. How to feel about that?

Is it necessary? No.
Will it allow me to be out more? Maybe.
Will it help my joints not take so much strain? Yes.

So it's a good thing then.

There is value in things that don't come easy.

The A-Zs of My Life with Ankylosing Spondylitis

{Trees and their beautiful strength inspire me to Stand Tall}

A is for Autoimmune. My body is attacking itself. A is also for Arthritis. There are multiple forms of arthritis. Ankylosing Spondylitis is an autoimmune form of arthritis, which primarily attacks the spine and large joints. It can also attack organs such as eyes, lungs and heart. This is not your grandmother's wear-and-tear, growing-older osteoarthritis.

B is for Bone Scan, the type of test which showed damage to my spine.

C is for Community. I don't know what I would do without the support of my family, friends, and local and online communities. C is also for Compassion, something I hope my daughters both have in spades. Growing up with a chronically ill mama is helping them learn to look out for others. C is for Cane, a mobility aid I may use in the future. C is for Costochondritis, inflammation of the chest wall, one of the pains I have regularly.

D is for Vitamin D, a supplement I take for bone strength.

E is for Exercise. Movement is a good thing for AS, but it has to be a form of exercise that is helpful, not harmful. I used to enjoy walking outdoors for exercise, but I currently can no longer walk much without damaging my body even more, so walking for exercise is a fond memory now. E is for Elephants, not something that has much to do with AS, but my favorite animal since age 7 and they still make me smile. E is also for Encourage, something I love to do. I can't do the splits or high kicks anymore, but I hope those around me see me as one of their personal cheerleaders.

F is for Fatigue. Some days it's hard to say what is more difficult, the pain or the fatigue. Not your normal tired. F is also for Flare-ups. When my symptoms are worse than normal, I say I am in a flare. F is for Fusion, the proverbial end-goal of Ankylosing Spondylitis. The spine tries to heal itself from the damage of constant inflammation in the joints by growing new bone which fills in between the joints and fuses (hardens) all the joints into one solid length of bone. Depending on where it occurs, fusion can make it difficult or impossible to bend, turn, walk, or even take a full breath. F is for Faith, not only in myself and my family, but also in God who says He has plans for a great future for me.

G is for Genetic. My family has forms of autoimmune arthritis, including Ankylosing Spondylitis and Rheumatoid Arthritis, on both sides. A few months before I was diagnosed, I tested positive for the gene associated with AS. G is also for Gratitude, an attitude I have adopted for life. No matter how bad my pain or my day is, there is always so much for which to be thankful. This isn't something I say flippantly, it is a deep part of how I view my life.

H is for Heat. Heat helps reduce my pain and helps prevent my body from clenching up, which causes further pain. I have multiple heating pads, an electric throw, and even a car blanket that plugs in.

I is for Inflammation, the inherit problem in my chronic inflammatory disease.

J is for Joints. I have pain in nearly every joint, jaw to toes, although not in every joint every day. J is also for Jonathan, my husband of almost 10 years who takes great care of me and thinks I'm cute even in pajamas.

K is for Kids. I always knew I wanted to be a mother, first and foremost. I am so grateful to have two sweet daughters who keep me laughing, moving, and thinking about other things besides myself and my problems. My girls are my buddies, they keep me company every day, whether good day or bad day. I enjoy encouraging their interests and artistic abilities, as well as being their teacher.

L is for Limp. I limp fairly frequently due to pain and problems in my hips, knees, SI joints, and feet. L is also for Lab Tests, which monitor my thyroid, iron and inflammation levels, keep an eye on how well my organs are functioning, as well as watch for development of other conditions.

M is for Memory Foam. I use memory foam pillows in bed and in my recliner.

N is for NSAIDS,  one class of medications commonly used to treat inflammatory diseases like AS. NSAIDS include medications such as Ibuprofen and Naproxen (Aleve).

O is for Omega 3, another supplement I take which is good for joints, among other things. O is also for Overdo, something I try not to do, while still making the most of every day and this life.

P is for Pain. I live with pain every day. It never goes away. P is also for Physical Therapy. I recently finished 3.5 months of PT.

Q is for Quick, something I am not anymore. I have adopted a slower pace for life, out of necessity and also to help prevent stress, which can contribute to flare-ups.

R is for Rheumatologist, the doctors who specialize in treating arthritis and autoimmune diseases. R is for Rest, something I have to do fairly often, which isn't always easy. R is for Recliner, a big gift I received for my last birthday/Mother's Day. We also jokingly called it the "Congrats-You-have-AS! gift."

S is for Spine, the #1 place AS attacks. S is also for Stiffness, the symptom that finally caused me to think maybe I had arthritis. S is for Stand Tall, the motto for AS. Better posture means, hopefully if I fuse, I will fuse straighter. My husband wears a LiveStrong style wristband, in support of my fight, which says Stand Tall.

T is for TENS Unit. While I don't often turn to this form of pain relief, when I am to the point where nothing else is helping, the TENS unit can sometimes give me a break from the pain. T is also for Thyroid, another thing I am being treated for and which is commonly a problem with autoimmune disorders. A few months ago I had an ultrasound of my thyroid.

U is for Unconditional, the way my husband loves me. It means the world.

V is for Victory. I believe my mental ability is more important than my physical ability. I believe that no matter what AS does to my body, it cannot damage my spirit unless I allow it to. I choose to maintain a positive attitude as much as I can, so that I win, not chronic disease.

W is for Water. High impact sports and forms of exercise are not advised for those with AS. I am advised to stick to low to zero impact exercise, like a gentle water exercise class. W is also for Writing, one of the things I enjoy doing to feed my soul and distract me from the pain.

X is for X-Rays, one of the imaging tests used to check for disease progression and damage. Others are CT scans, MRIs and bone scans. I have been diagnosed for 16 months and have so far had two of these tests.

Y is for saying YES to life! Because having a disease like this just makes me more aware of how precious life is.

Z is for Zipper, an amusement park ride my 8 year-old decided she would never ride again last summer. While she was experiencing those rides, I kept busy waving and taking pictures, as amusement park rides are something I can no longer do. Z is also for Zest, something I try to maintain for life, no matter what challenges I face.

Building Community

There are several things that are important to me in life and with this blog. One of those things is authenticity. I want to be real, without being negative, and I want to represent only the truth, not a fake version of myself or my life.

Another thing is that I want Live Art.fully to be a community, not just a platform from which I write.

So in the interest of ensuring the development and continuity of those things, I thought we might do a {Tell Me Your Story} post. I would love to know more about YOU (if you are reading this, then yes, I mean you, especially if you are a lurker and haven't commented here before), and I want you to know me.

If you have questions about me, my illness, my life, my art or writing, my family, etc... please feel free to ask in the comments.

And I would love to know a few things about you. So please share:

Why do you read/follow Live Art.fully?

Where where you raised and/or where are you currently living?

What makes you come alive, and do you take time for it on a regular basis?

What's your favorite snack?

What's your favorite movie or TV show?

And please, if you are living with chronic pain or illness, share a little bit about that and how it effects your life.

I love the idea of Live Art.fully being a place where friendships begin or strengthen, and where we can encourage each other. If we were to meet for tea or coffee, what would you tell me about your story?

Evening Hours

we tuck in little girls and fulfill requests like
more light, less light, music, fresh water.
we hug, kiss, pray.

we close the door with "goodnight little girls":
"mama loves you. tomorrow is ballet and we'll make art," i say on a monday night.
"i love you, you can wake me up in the morning and we'll play Wii," he says on a saturday.

there may have been baths and hair braiding first,
a pile of giggling in the recliner over Junie B. Jones
or chapters of  The Jesus Storybook Bible, Mama reading through grateful tears.

we may be at the end of what we have to give,
or we may reluctantly tuck them in,
wishing there was more time in the pockets of today.

the evening comes every 24 hours
and it looks different, yet the same
because no matter what, there is love,

always love

and the winner is........

Sheila wins the DaySpring giveaway for $20 off a $20 or more purchase. I will be contacting Sheila with the code and details.

Thanks everyone for participating and congratulations to Sheila!

Using Your Words: Sending Cards to Encourage a Heart

{my little 5 year-old writing a Happy Birthday card to her sister}

I have always loved writing notes and trying to encourage people. When I was little, whenever we would get together with my cousins, I would always rope my (just younger) boy cousins into creating cards and notes with me and then we would hide them for our moms, aunts, etc.... to find. We once hid one in my aunt's mini-van gas tank (not in the tank, just tucked in there behind the door, so that next time she had to get gas, she would find encouragement. Yes, so very sweet of us....

I am a big fan of cards and love to mail them. I could spend hours in card stores, and have.

So when (in)courage gave me the opportunity to blog about DaySpring cards in exchange for some of their beautiful collections, I didn't think twice.

The afternoon that FedEx pulled up to my house and the delivery driver handed me a box was a good day indeed.

I received these beautiful cards -- the So True collection, designed to encourage women in your life. This collection of ten GORGEOUS cards (I hesitated to mail any I loved them THAT much), includes cards for birthdays, thinking of you, encouragement, praying for you, and general friendship. Each card has a hand-made element included like a hand torn layer. They are truly above and beyond what I expected and I am sure I will purchase this collection when I've run out. Also, did I mention the envelopes are a recycled looking brown? LOVE. I also received a pack of Thank You cards and a beautiful card organizer.

I have been a fan of DaySpring for many many years, but I have to say -- the quality of these cards is truly impressive. These are just fabulous.

I sent one to a friend who has recently experienced a devastating loss. I earmarked one for my aunt's birthday and one for a friend battling cancer. I can't wait to drop one in the mail to a friend with chronic illness and to a friend of little kids who is still in that "in-the-trenches-survival" mode. (Who am I kidding, I still feel like that sometimes too.) I also have one set aside to send to a friend who is quietly loyal and supportive of me, my health, my journey and all of my creative pursuits. Everyone should have a friend like her.

You never know how God can use your words to uplift and encourage a heart.

If you're not a card person but you adore the So True collection designs, check out the entire collection, which includes calendars, mugs and journals.

So I was lucky to receive this collection free in exchange for my honest review, but it's your lucky day too, because (in)courage and DaySpring are offering one of YOU $20 off a DaySpring order of $20 or more. So we're going to do a Giveaway!!!! To enter, leave a comment to this post (and maybe share about Live Art.fully on Facebook, Twitter, or your blog, if you're feeling generous). My girls and I will do a drawing on Monday, January 30th and post the winner. I will then get in touch with the winner via email with the code DaySpring gave me. When using the code, the winner will be responsible for shipping charges. The code expires on 12/31/2012 so you have almost a year to use it.

So are you in? Let's use our words to bless someone this week.