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.

17 things i'm loving... {st. patrick's day}

1. daffodils & tulips

2. puffy white clouds

3. colored sky behind black tree & building silhouettes

4. bookstores

5. coffee shops

 6. being a family

7. my red laptop, affectionally called rouge

8. the pacific ocean

9. canson wirebound 7x10 journals

10. my live art.fully necklace, made by fabulous jewelry designer & blogger, lisa leonard.

11. kelle hampton's blog Enjoying the Small Things. kelle is a mother of 2 darling girls, professional photographer and writer. she blogs about the beauty in every day.

12. the growing journaling community on our live art.fully facebook fan page. become a fan and be a part of the discussions & inspiration.

13. hazelnut coffee creamer

14. lounge pants

15. the sound of the pouring rain late at night

16. pandora. register for free and type in your favorite song or artist. pandora creates a radio station based on what you entered. it's a great way to discover new artists.

17. a couple of green-clad girls, who are part irish.

what are you loving? 

Finding Sacredness in My Corner of the World

I was thinking today about how content I am, doing just what I do in my life right now. I start the day snuggling two little girls, who are more awake than I am, in my chair the color of chocolate. I make a pot of coffee and take pleasure in watching the steam rise in curls out of a teal mug. I cook a pot of oatmeal or griddle up some chocolate chip pancakes. I pack lunch in a purple monkey box and help my little blonde firstborn pick out her outfit for school. I smooth tangled locks into cornsilk pigtails and pontails. I inspect brushed teeth, and check to see if shoes are on the right feet. I make sure homework sheets are completed, reading sheets are ready to hand in, and check the calendar so I can give Hannah a heads-up of what's happening at school.

I grab my bag and a lanky 3 year-old wearing her favorite brown boots, and we're out the door with Hannah running ahead, her bright blue Tinkerbell backpack bouncing. Sometimes we're happy and sometimes we're frazzled. Sometimes Natalie's still in pajamas, and I'm yelling, "C'mon, c'mon, we're late!" Sometimes we're early and have time to, literally, stop and smell the [daffodils].

We drive to school, talking about the day or about Hannah's classmates, or about afterschool plans. Sometimes one of the girls makes a special song request. When we've started the day off in not the best way, I ask Hannah to say a prayer on the way to school. And she does. And I reach back and squeeze her little hand in mine, and tell her I love her.

I make a point, no matter how the morning began, to hug her tightly in front of her school and tell her, "I love you. I'm so proud of you. I'll see you at 3 o'clock." The other day, she said, "I love you too," and dashed to the front door, before turning back to holler, "Don't forget!"

These are the moments I know that I am loved. These are the affirmations that so unexpectedly crop up to erase the uncertainties. Do they know I love them? Does she know that I'm so proud of her? Am I telling them enough, and showing them enough, that they are precious? Will she grow to be confident and walk tall? Am I building them up or squashing them?

I desire, so strongly, to love well. Anybody can love, but to love well takes effort. It takes intention and planning and quality time.

Natalie & I drive home to our little red house where we do things like start a load of laundry, tidy up the kitchen, cuddle on the couch, and play in the playroom. She finds me unloading the dishwasher, and says, "I could help you!" in her chirpy little voice that is like music.

It may not sound like much, but it's wonderful. From a young age, my biggest wishes were to be married and be a mother. As I grew up I added "writer" to my list of dreams. Throughout the years, there were obstacles that loomed so large I feared my dreams were unattainable.

But they weren't.

I met a man who is an impeccable model of loving well. He has loved me whether I was sick or well, "thick" or thin, happy or sad, thriving or just surviving. He has never wavered, not even for a moment, in his commitment to me.

And then we made a family... this beautiful duo of silky-haired little women who giggle and run and squabble and color (sometimes on the walls) while Natalie chirps, "I art-ing, Mama!"

This life, small as it may be, is what great things are made of.

"The Life of Me & Nally" by guest blogger, Hannah (age 6)

This day was a good day.

On Saturday, is the best day, sort of... This Saturday I get to go to Grama's house.

This was 2 nights ago. This was the first day that I had my pajamas that I'm wearing in this picture. I love the pajamas. Last night, I weared them. I got them dirty because I spilled some tea on them this morning. Daddy didn't give it to me; I got into the tea myself. It was Valentime's tea. I knew how to make tea. It was yummy. I putted 4 cubes of sugar in it, and that was as yummy as it got.

Today so far has been the best day of my life. And it's pretty fun, because I'm going to have to change 4 times today. So I just like today, because it's a good day. And that would be the end of my blog.

These are the moments...

Take time to stop and smell the daffodils
We only get to live today once.

I only get today that my firstborn is this small. Tomorrow she will be older.

This is one of the last few months she'll be in Kindergarten.
One of the last few months I'll hug her and say, "I love you. I'll see you at 3 o'clock."
One of the last few months I'll watch her walk into her school -- so big and yet so small...

Walk into the world, to learn & to grow.

Have you taken any time lately to capture the best parts of your life? Whether that's with a camera or a pen, don't forget to make time. Things change so fast, and your memory will not hold onto the details you think it will.

Thoughts on Family

Today I am feeling tired. I miss Jonathan & Hannah and can't wait until about 5:30 when we're all together again. Dinner, stories, family togetherness.....

I was out getting groceries when Jonathan came home for lunch. When I got home I found his "footprints" flashing across my laptop screensaver: "You are Amazing!"

Natalie keeps plopping in my lap and squeezing me tightly around the neck. She says, "I love you because you give me so many kisses."

This morning, I looked Hannah straight in her gold-flecked blue eyes and told her, "I adore you." I told her that the lucky thing about being her Mama is that I get to adore her more than anyone else in the whole world does. She said, "You don't adore me most." I asked her who could possibly adore her more than I do, and she replied with a little impish grin, "Jesus."

I'm off to make this cake for dessert tonight, when the four of us are all under one roof again. It's no one's birthday today, but just being a family is reason enough to celebrate.

I Feel So Lucky

i feel so lucky.

there's so much love around here.

we're not perfect. i'm not a perfect mom.

but, you know what? no one is.

i feel so lucky to have a little girl

named natalie kate

who is very very tall, and has long eyelashes

and likes to make hearts with her hands and peek through at me

from the backseat.

i feel so lucky to have a bigger little girl

named hannah elizabeth

who loves to be a helper, and be a big sister

i feel so lucky to have a little red house

that shelters the four of us from wind & rain & cold

and that fits us.

i feel so lucky to be sitting next to a man who loves me,

without condition.

a man who knows not to take it personally if i'm not thrilled with much

first thing in the morning,

and knows when i need quiet,

and to put on the teakettle after the girls are snug in their beds at night.

a man who has demonstrated over the years, so well, how to love.

i feel so lucky.

One Spring-like Winter Afternoon at the Playground...

I have two daughters. They are 6 and 3 years old. My younger daughter is afraid of dogs, just as her sister was at this age. One time we went to the playground. The athletic field there is bordered by residential houses and backyards. From behind a fence came a ferocious-sounding bark. Natalie ran to me in fear, even younger than she is now, and as I lifted her into my arms, she asked, wide-eyed, "Is it a dog, or a giraffe?"

Skip forward to today. We were back at the same playground, taking advantage of natural Vitamin D on an astoundingly gorgeous February day. A man and a woman were at the playground with two large dogs. They began to run closer to us so I called for Natalie to come to me, as I knew she would be terrified of the dogs. I again lifted her into my arms and held her close.

Natalie: "Why do they have dogs?"

Me: "They like dogs."

Natalie: Well, I don't."

Me: "I know you don't. But someday you might."

Natalie, breaking into a huge smile: "When I'm a big girl? And I'll say, 'Look, Mommy! A dog's coming! I LOVE DOGS!!'"

It occurred to me that we could all take a lesson from my little 3 year-old. So often we think that fear is permanent; that things that seem unchanging can't be altered. But sometimes, with time and personal growth, fear dissipates into understanding, and then maybe even joy.

Perhaps real courage is being open to change, and to looking fear in the face and asking, "Are you a dog or a giraffe?"

What are you afraid of?

Thoughts Going into the Weekend

Taking a break to chill on the couch with a precious 3 year-old. This girl has long eyelashes, long hair, long fingers & long legs. She is looking like such a big girl.

Lots on my mind today. First of all, I'm enjoying the sunshine (a rarity here in the rainy Northwest), and looking forward to family time and a change of pace this weekend.

I'd also like to warmly welcome those of you who have found my blog via Bonita's Encouraging Words for Writer's blog. It's great to have you here!

Using some sea life stamps made by Cavallini in my journal today. I have three sets of Cavallini stamps. They come in tin boxes, and I love them. If you've never tried using stamping in your journal, I encourage you to try it. I prefer brush markers over stamp pads.

I am praying for a friend of mine who is in the hospital right now, and wishing I could ease her pain.

What are your plans for the weekend?

Sick

We had a good morning making chocolate chip pancakes, watching Clifford, coloring with markers in coloring books, and hanging out in our PJs.

This afternoon I was blessed with some quiet time. My mom took the girls to her house, so I could rest. I have a sinus cold, or maybe a sinus infection, and really don't feel well.

Hopefully next week I'll be up to thinking creatively and posting some new blogs. Right now, my head is stuffed with pressure and I have a headache a lot of the time.

I hope you'll stay tuned... For now it's Kleenex, cold & sinus meds, and tea.

Today

Today the weight of motherhood is heavy.

Today I have a head cold.

Today I had laundry going in both machines simultaneously, but forgot about it.

Today I drank lemon-honey tea.

Today I was embarrassed.

Today I am thankful for a husband who is a partner in life and in parenthood.

Today I feel a little happy and a little sad and not terribly creative.

That's my reality, today.

Things We Do

1.) Visit the library and stock up on new & old favorites in the children's section. Watch my girls make a puppet show. My 3 year-old might find new must-have shoes on a random child and ask to try them on. My 5 year-old might arrange all the big stuffed animals around a circular colored table and set them all up reading Curious George. I might sit and scribble in my notebook for 5 minutes, all while being interrupted by the chirpy 3 year-old's need to go potty, or my need to chase said 3 year-old down before she scales the stairs to the (shhhhhh!) adult section. My 5 year-old and I might track down books I read as a child (can I describe these troves as vintage yet?) And undoubtedly, we will leave with so many books & movies in my big tote that my back is nearly out of alignment by the time we get to the car.

2.) Go on a walk to the nearby school playground, where we swing (sometimes even me), slide (last time my 5 year-old slid through a standing puddle from the rain, and left the playground with a wet rump, completely unamused), run pel-mel across the field while Mama cheerleads, "GO! Good running! Wow, you're fast! Look at you, you're flying!!!!" secretly thinking perhaps this will tire them out and they'll sleep REALLY well tonight... "3" loves to stand behind a little plastic ledge and pretend she works at a coffee shop. I have no idea where she learned about coffee.... ;-) "5" likes to play some version of hop scotch and tether ball and she especially loves when there are other kids to interrogate, er...., get acquainted with. I especially love to photograph all of this random merriment.

3.) Enjoy a 15 minute drive to the beach, all the while listening to music and enjoying the relaxation of sitting, which can only be truly appreciated by parents of Small Children Who Love To Run & Climb. 15 minutes that "5" and "3" are buckled safely & securely into their car seats. When we get there we might jump in the tide with our pantlegs rolled up (or, if you're "3" you might just ditch the britches altogether...), make a sandcake with stick-and-feather candles, "3" might chase seagulls or scatter Goldfish crackers for them to snack on, and once again, Mama might recline against a log and attempt to scribble profound thoughts in a notebook for 5 minutes. "5" might pick the little purple wildflowers and "3" will definitely haul rocks about and sort them into piles. Before or afterwards we might take 30 lovely minutes to get a snack at the nearby coffee shop and "3" will play with toys the establishment keeps on hand for kids just like herself, and "5" will definitely ask for a vanilla steamer. We will laugh and fill our bellies to satisfaction and then go home and wash our sandy feet in the bathtub, because Mama likes playing, but also likes tidiness.

4.) Come home from Kindergarten and after-school errands, change into comfy clothes, make tea (or pink milk for "3"), and pile onto the couch all in a heap to decompress. Mama might read 6 or 8 or 10 children's books, or we might watch "Free Willy" (because "5" adores whales), or "Parent Trap" (the new or the old version will do), or if we are feeling particularly sacrificial, watch an episode of "Dora" (because "3" is attached to the little explorer, and her voice which makes Mama's ears bleed, and her little pal Boots the Monkey [probably because of his stylish red footwear]).

5.) Create Art at our dining table where "3" will use crayons and "5" will need markers or colored pens and a host of paper/coloring books, and definitely tape, because "5" has discovered that she can be a veritable ENGINEER if she just has TAPE. If they get really involved in their creations, Mama will (you guessed it) attempt to scribble in her notebook for 5 minutes.

6.) Have tea parties. Sometimes these involve invitations and RSVPs and fine ladies and small descendants and a tea kettle and boxes of tea and silver spoons and a tribe of mugs and a tall glass canister of sugar and a little pitcher of cream. More often, the parties happen at the round coffee table in the living room, atop our finest tablecloth (a baby blanket), laid with our fanciest play teacups (fancy enough to actually chip and shatter) on our fanciest saucers, with tiny silver spoons placed before each large stuffed friend, who answer to names like Tigger, Pooh, and Jagbar the Orangutan (stand-up fellow, that one!)

These are the memories we are making. These are the days and the moments I will remember. These are the things I do when I "don't have time" and have "things I need to do" and when my floor is dirty and the laundry is formed into small mountains by my washing machine. And I never regret it. And after two little girls are snug in their beds, I sometimes stay up late recording our little moments and epic adventures, and I indulge in the quiet and take more than 5 minutes (!), scribbling their little girl dialogue and thought-provoking questions into my notebook and pasting in the photographs that (attempted to) capture the moment.

Extraordinary (Holiday) Monday

These are the best kinds of days... sunshine, not hot, and fresh air; outing with my family; everyone happy; toddler giggles from the playground tire swing; coffee & journaling; burger lunch outside; good conversation with Jonathan; strolling while hand-holding; tourist toodling; feeling elegant; wearing pearls; the awareness that I respect the man I married; the absence of tasks and duties waiting at home. No schedule, no agenda... just togetherness and fun.