Make My Words a Blessing

This is the prayer I prayed today as I drove through heavy rain: "Please bless my efforts. Make my words a blessing."

As a teenager I was sent by my school to a Young Writer's Conference. That was the last time I've been to a writing conference. Until now. I am blogging from a hotel room tonight, and will attend a writer's conference tomorrow. This is a dream come true for me.

Lately my health has been worse. I was recently in a flare-up for a few weeks that was pretty scary. It felt so severe that I wasn't sure if it was just a flare, or if my disease had progressed and this was the "new normal." I was having nerve pain in my leg, my hip was flared and I was having great difficulty walking. I was running fevers most of the time and was a level of tired I can't describe. I scheduled an appointment with my doctor.

My husband bought me a cane. I began to worry that this was how I would get around now, by using a cane.

Thankfully, the flare has calmed down. My hip is back to bearable now. I can walk better again, and haven't been using the cane. But I am still unbearably exhausted.

I'll be seeing my doctor next week, but wanted to catch you up on why I haven't been blogging lately, let you know what you can pray for, and thank you, as ever, for walking alongside me on my journey.

I am extremely tired tonight and plan to turn in early so that I can enjoy my big day tomorrow.

What is your prayer these days? Is there something you'd like me to include in my prayers?


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 inherent 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?
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