A Stiff Upper Lip: Denial, Grief, and Acceptance of Chronic Disease

It's been over half my life since I first began having pain walking. I was 17 and a junior in high school. I credited to my hips but didn't think to wonder why a teenager would be having trouble walking. I chalked it up to too much exercise. I didn't see a doctor. I didn't think it might be a sign of something to come that would effect my mobility. My mobility was being effected but I didn't even think of it that way. Denial?

We had Ankylosing Spondylitis in our family. I knew it was arthritis and it effected the spine, but that was about all I knew. I didn't know it was a chronic inflammatory disease. I didn't know it was systemic and could effect your organs as well as your joints. I didn't even know it could harm your eyes or your hands.

I did not for a second put our family history of AS and my hip pain together.

It's been over half my life since my first symptom of AS. It's been 8 years -- I can't believe that -- since I began having a lot of pain. It's been about 7 years since I started waking with a stiff lower spine, 4.5 years since my oldest was in Kindergarten and I had my first of what I think of as a general autoimmune flare -- crushing fatigue, fever, swelling, nausea, and a general feeling of illness along with the pain, stiffness, and occasional limping.

I remember the days of waking feeling like I needed WD-40, and how I knew a hot shower and a couple of Ibuprofen would relieve my symptoms greatly. How much life has changed since then...

When I was in the process of being worked up for diagnosis -- was it Lupus, they wondered, Rheumatoid Arthritis; yes, they acquiesced, it could be Ankylosing Spondylitis since I had family history, but "that wasn't as common in women" -- I read blogs of women living with severe pain and medical difficulty. I was inspired and determined that I would be that kind of woman. I would be as positive as I could be, I would shine, I would move forward in a way that would inspire other people. By the time a rheumatologist confirmed my primary doctor's suspicions of AS, I was already certain I had it, and basically walked out of his office and forward into a life of Positive & Inspiring. That was what mattered to me, that I could help others know they weren't alone, that I could show how to live life in a positive, joyful way, even in the midst of pain and with a disease that often disables and disfigures.

It's been 3.5 years since diagnosis, and 1.5 years since a Spondyloarthropathy specialist told me that I have a full blown case of Ankylosing Spondylitis. Last year, still another rheumatologist told me I have a severe case of AS.

It's been on my mind a lot recently, the severity of this disease. How it hurts and cripples people-- people I've met online and in person, people I call my friends. I know people who've had spinal surgeries, hip replacements, people who are essentially homebound. I know people who have organ involvement, eye damage, who need all sorts of mobility aids including wheelchairs to get around. I know young people who have died of organ complications to AS, and to suicide.

The pain, physical and emotional, can be unimaginable.

Sometimes it feels like I have only allowed myself to be an advocate for those people. For everyone else with AS. Sometimes it feels like I have only thought of them fusing, of their necks curving and their heads being permanently locked into a forward stoop.

This disease is not a joke. Part of how I can move forward in a positive manner is accepting that reality. This is real and it has been life changing. More life changing than most people realize.

I am working on starting to allow myself to feel sad about that. Not just grateful despite the disease. Not just thankful it hasn't yet effected others who I share genes with. I won't wallow. But I do need to process and grieve how my life is effected, how my family is effected, and that my future will be effected by a genetic, chronic, systemic, arthritic, degenerative and progressive disease.

That's not wallowing. That's just moving out of denial and into acceptance. Acceptance is acknowledgement, and that can free us to move forward. Acceptance is not giving up, or giving in, or refusing to fight.

"God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference." {Reinhold Niebuhr}

Nature Journaling & Adventure-Based Learning

I thought I'd give you a peek into our homeschooling life by sharing intermittent posts on various ways we're learning. Hopefully this post will interest those who journal or would like to journal, and those who homeschool. For those who are new to Live Art.fully, I homeschool our two daughters who have recently turned ten and seven years old. 

Yesterday dawned sunny again in the Pacific Northwest (it's been beautiful lately, an uncharacteristically warm and dry winter). I had a bee in my bonnet to take my girls out on an adventure. We've been doing this lately and I'm loving it. We pack a jacket, mittens, simple lunch (cheese sandwiches, water bottles, and yogurt, for example), sketch books and paints, and off we go somewhere fabulous. 

This is our fourth year learning at home and I feel like this year we've turned a corner in terms of finding our niche. I'm learning how my girls learn best, and what makes and keeps me inspired. I've found new ways to prevent burn-out for all of us, and how to use my creativity to make learning fun. 

Yesterday we took our sketchbooks to a nearby nature trail. We ate our picnic of bread and cheese, blueberries, juice, and cookies at a picnic table under a sky my 7 year-old described as "neon blue." My 10 year-old disagreed with her sister, stating that it was not neon, just blue. Little sister explained that it was neon if you were wearing sunglasses.

After munching our picnic, the girls ran off nearby to explore and I set to work in my journal after finding a few nature treasures to sketch. Given the time of year, it took a bit more looking and creativity than it might in other seasons. There were no birds, butterflies, eggs, nests, feathers, or flowers.

Sketching under neon blue sky, with warm sun and still-crisp January air, it was quite easy to feel inspired. The girls chattered about how much fun they were having and even toyed with skipping ballet class, in favor of extending our nature time, but in the end we packed it up and delivered our dancer to the studio.

Something I've noticed about our nature-based learning adventures is that they leave us invigorated and curious to know more. Post ballet, we hit the library to look for books on nature journaling, and keeping a nature/field sketchbook. I found a great children's book on John James Audubon, The Boy Who Drew Birds. 

Nature journaling is a new form of journaling for me, and something I'm planning to incorporate into our outdoor learning adventures & field trips in the coming months. I'm excited to get these little watercolor sketches into my journal, and to see my girls document what they're observing in the natural world. What better way to slow down long enough to truly see?

Introducing.... My Word of Intention 2014

"If I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have the capacity at the beginning."

 {Mahatma Ghandi}

I've been thinking about my word for this year for probably six weeks, and it's been one of the main things on my mind recently. To be honest, where RECLAIM arrived whole and perfect last year, this year's word plagued me. Starting about last summer a word had fluttered into my life and landed... and that word, OVERCOME, was one that almost became my word this year. But I just wasn't quite certain. Another word almost made it: CLIMB. A word that would represent the daily journey of struggling, effort, perseverance, and the beauty waiting when we don't give up. 

But it wasn't as pretty a word as I wanted. And though it represented, for me personally, an intangible mental process I take on every day, I knew that by itself, it wasn't as self-explanatory as I might want.

"As is our confidence, so is our capacity." {William Hazlitt}

And then yesterday, when I was still engaged in the wrestling process of words, this word came to me...

CAPACITY

"Strength does not come from physical capacity. It comes from an indomitable will." {Mahatma Ghandi}

CAPACITY excited me, inspired me, and empowered me, and it did so on a day I am struggling with bronchitis/pneumonia. That was a litmus test for me -- as physical struggle is a regular part of my life, I need a word that will push and carry and comfort me on the bad days as well as the days that I feel I am capable on my own.

CAPACITY. To sum it up in five words, to me it means "I have what it takes."

It represents the infinite ability within us all -- to love, to be loved, to imagine and create, to build and invent, to grow, change, achieve, and yes, OVERCOME obstacles.

In the daily climb, CAPACITY is the mental fortitude to press on when legs throb. It is mind over matter. It is being Brave Enough. It is Doing it Anyway.

"The ultimate creative capacity of the brain may be, for all practical purposes, infinite." {George Leonard}

But I also needed a word that could mean finite. That wouldn't feel bossy when I needed the ability to be gracious with myself. When I need to rest more than press on. 

CAPACITY: maxed out. 

In these instances, CAPACITY will serve to remind me that while I may not have the physical capacity today, I will have it another day. 

I'm excited to see what CAPACITY and I can do together this year. Some of the specific things I want to be intentional about this year are using my words more. I didn't read or write much at all in 2013, and as a writer who was first a voracious reader, that doesn't speak well to me being my best self, on a soul level. I want to use my words to inspire and encourage people. I want my words to elevate and uplift, not to harm.

I see the capacity in YOU and I hope you let your potential take you places this year!

"You are beautiful. Your beauty, just like your capacity for life, happiness, and success, is immeasurable." {Steve Maraboli}

What is YOUR word this year?

She Chose to Be Brave, Take Risks.... Fly!

I created this art journaling spread to commemorate a risk I took. I wanted to remind myself that sometimes change is not just good, but necessary, that sometimes there are great things waiting on the other side of courage.

What I've learned is that sometimes it takes risking your life to save your life. 

Have you ever taken a risk that proved to be invaluable?