Hello First Fall Monday!

Just a quick little post today to say hello to Monday and the week. I'm linking up with Lisa Leonard from Lisa Leonard Designs. Do you know Lisa? Lisa is mom to two boys, wife to Steve, lives in Cali and is a jewelry designer, photographer, and all around creative. Love her blog. Go visit!

Hello Monday!
Hello steel cut oatmeal with brown sugar, cinnamon & cream
Hello coffee in my Penguin Books mug
Hello Peppermint Mocha creamer (YAY, it's that time of year!)
Hello getting the laundry going
Hello costochondritis
Hello doing math with my 6 year-old
Hello getting organized for the week
Hello still-in-my-pjs-at-2-pm
Hello first week of Fall
Hello Fall TV premiere week!
Hello rain, I've missed you...

What's your Monday holding? I'd love to hear. Share in the comments, or jump in and link up with Lisa.

Changing Seasons: Transitioning to Life with Chronic Disease

Three years ago today, September 22, 2010, I received my official AS diagnosis. I had a 'probable' diagnosis a few months before that from my primary doctor. But it was 9/22/10 that I spent two solid hours with a rheumatologist and heard the words "I am diagnosing you with Ankylosing Spondylitis." It wasn't a shock. If anything, on that day, I just felt relief. That may sound strange -- to be relieved to hear confirmation that you have a life-changing disease -- but I've heard the same sentiment expressed by many others with chronic diseases. The unknowns are hard. It's nice to just know.

It was chilly enough last night to slip on my flannel penguin pajamas, a pair I don't wear during the summer because they're too warm. I went to bed with it Summer and woke up to Fall.

That's a bit how life felt when I developed this genetic, chronic inflammatory disease that attacks the spine and joints, and can also pounce on eyes and internal organs, cause fevers and pronounced fatigue.

Life, unencroached upon by chronic disease, is somewhat like Summer. The weather's more predictable, you can get out more, you don't get 'rained in' by symptoms that weren't forecasted. You don't need as much gear to brave the elements.

But just like fall, with its rainy days by the fire and long crisp nights to go on hayrides and watch football games and go for walks in the crunchy, colorful leaves, life with chronic illness can hold beauty. It may be a different beauty than pre-diagnosis "summer" beauty, but it's beauty just the same.

Adjusting to life with a chronic disease can throw you for a loop. People grapple with depression, reinventing themselves, doubts and fear about their futures, and even, at times, despair. In my three years of being an official "Spondy", I've personally known of three others who have died at a young age: two to AS-related organ complications, and one to suicide.

I guarantee that unless you have such a disease or are very close to someone living with one, you don't know the half of what life is like post-diagnosis.

Being a "fall" kind of person to begin with (someone who enjoys writing, reading, and a more indoor, home-based lifestyle), perhaps I'm better suited for this type of diagnosis. I think of people who love being outdoors and pushing the adrenaline envelope, and I'm truly grateful that no part of my essential self is tied to activities I can no longer pursue. If one may end up in a wheelchair, using a cane, or undergoing hip replacement surgery, wouldn't it be better for a writer than a racer?

Seasons change. My life is altered by chronic disease. I'm still learning and growing as a person living with AS.

Stand tall and walk on, even if you have to limp. Life goes on and it is beautiful, even with its storms.

Q&A: Creating an Artful Life with Kids

Months ago, I received an email from a friend. With her permission, I've posted part of it here:

Q: "I love the pictures you post of you and your girls doing artistic, fun things together. I love seeing what your daughters come up with, and how creative they are, just like their mama. The reason I'm writing you is because I want help. Lol! I want to know how you started being creative with your kids, how old they were when you taught them how to journal and create with various media, and how you encourage artistic creativity without feeling like you're forcing an ideal upon them.

I want to be creative with my girls. I want them to get the chance, from a young age, to draw, trace, paint, colour, write, sketch, or whatever. I want them to have the chance to ENJOY art. Because I don't know how to approach something I'm not good at. 

Any suggestions/advice/tips? Thanks for your time."

A:

First of all, thanks for your question, and my sincere apologies for taking so long to answer it. 

I didn't always do art. I spent the better part of my life pushing against anything that suggested I even try. I told myself I was a writer, I was creative, but in no way was I an artist or the least bit artistic. I journaled, I wrote, I scrapbooked, I doodled, I collaged. But I drew the line at anything requiring a paint brush. I knew absolutely nothing about canvases, brushes, different types of paint, etc... and am still slowly learning my way around those sort of supplies.

When my firstborn daughter was about 1 or 1-1/2 years old, I bought jumbo crayons. Crayons didn't intimidate me in the slightest. I bought coloring books, activity books, notebooks, and little journals in the years to come. 

At some point I bought WASHABLE Crayola watercolor paints for kids. Emphasis on washable. At that point I was very hung on up messy, and anything that was going to be messy I resisted. Especially if it was unfamiliar. I would bake cookies from scratch, but painting was out of my realm.

So to start with, there were crayons, white printer paper, and washable watercolor paint sets that came with a single kids paintbrush. That's where we started. You can get all of that for $10. It's a basic place to start -- blank surface + color.

Color + Heart = Art.

Through the years, we've learned together, the girls and I, about canvases (buy packs at art/craft stores to save money), different types of paper, and various media such as pencils, paints, oil pastels, etc...

If you're ready for a little more than Crayola's basic art supplies for kids, you might buy a combo pack of paintbrushes of assorted sizes, a pad of watercolor and mixed-media paper, a spiral bound blank book for each child, and some inexpensive but surprisingly nice quality watercolors. I LOVE these Loew-Cornell Simply Art Watercolor Cakes. Under $7, luscious colors, and I have personally used this set for over a year for all of my art journaling and art projects. 

Some additional supplies you might consider are easel rolls of white paper, construction paper, glue, Mod Podge, markers, gel pens, and stickers. When we went "Back to School" shopping for this year of learning at home, we bought each girl a sketchbook, a paint and marker paper pad, whatever new crayons/makers/paints they were low on or had used up. Art is incorporated in our home learning and playing.

For a person who had no artistic experience, and was quite frankly completely intimidated by anything art-related, I have learned to whole-heartedly embrace art and its messiness. 

If you're worried about the mess involved, I recommend a drop cloth or old sheet, art smocks or aprons, Mr. Clean magic erasers, all-purpose cleaner sprays, and paper towels. The type of media (paint, markers, etc...) you purchase can make the clean up process easy-peasy or a little more of a challenge, so consider before it goes in your shopping cart what level of clean-up commitment you are prepared for.

My girls are 9 and 6 now, and there's only one art product we own that I'm not prepared to clean up on a daily basis, and that's tempera paint. It's messier and thicker, and will temporarily stain skin. When we use that kind of paint, I need to know that we're staying home all day or at least have a several hour chunk of time I can devote.  Sometimes for school we have Art Day, and that's the type of day I usually pull out the more messy, time-consuming paint and craft projects, like homemade Play-doh.

As for my art "philosophy," I believe everyone has the ability to be artistic. I think art and creativity are things we need to introduce kids to at a young age, and make available for them to explore throughout their growing-up years. I believe fervently that life will knock you around, and that we all, regardless of age or background, need something to help us process, heal, and calm. For some that might be running or some type of sport. For others that might be gardening, baking, or music. Or it might be journaling or painting or doodling. I want to be the kind of parent who introduces my kids to a variety of activities that they can choose from when they need a place of solace, inspiration, or therapy.

There's no right way to do art. There are no mistakes. Art should not be graded. Just give your kids some tools to explore and make something colorful. Hang it, frame it, and show them their art has value.

Create together. If you sit down with a notebook and some colored pencils and start doodling or sketching, most kids will gravitate to you and show curiosity and interest. You don't need to have any artistic ability to introduce kids to art. All you need is a willingness to play and try new things.




More resources on creating with kids:

Tinkerlab
Ucreate with Kids

The Art of Living Well with a Chronic Condition

This is the first post of a new blog series. The posts in this series will include my thoughts on a variety of subjects, all beginning with "The Art of."

Today I want to talk about the Art of Living Well with a Chronic Condition.

To begin, a little disclaimer. I was diagnosed with Ankylosing Spondylitis 3 years ago this month, but have been living with chronic pain since 2005, when I lost a baby and went through a chain of operations. I also spent about half of high school in chronic pain. So while I am a bit of an AS "newbie", I am not new to chronic pain, and have the scars to prove it.

I was very fortunate in that I discovered two bloggers in the years leading up to my AS diagnosis. Two female bloggers living with chronic pain. One was Sara Frankl, who lived an incredibly inspiring life and taught countless people (including me) to Choose Joy. Sara died in 2011 of complications to AS.

The other was NieNie. Stephanie Nielson was severely burned in a private plane crash. She nearly died. She has endured countless operations, skin grafts and more in the years since.

Both showed me that it was possible to Choose Joy no matter your circumstances, and that you could inspire people while doing it.

I determined in the summer of 2010, during a journaling session in a coffee shop, that if Sara and Stephanie could do it, so could I. Regardless of what came my way, I decided I would make as many commitments and recommitments as needed to adopt and maintain an attitude of joy and gratitude.

I encourage you to visit the above mentioned blogs and read some of their stories.

Here are some of my personal tips on living well with a chronic condition:

1.) Decide that no matter what your condition takes from you, you will fight to retain your identity. Do everything you can to ensure that your physical health does not rob you of what makes you unique. Adapt, modify, replace a hobby with a new hobby, but do not let go of your essential self.

2.) Do not give in to bitterness. Yes, you have a chronic condition, and no, it's not fun. Many others do too. Some conditions are more difficult than yours, others less difficult. This is yours. Grieve it, accept it, and then get on with the business of living your best life despite it.

3.) Differentiate your physical self from your mental/emotional self. I think of my body as a house. I live inside that house. AS likes to wreak havoc on my house. Inside the house though, I am unshakeable. I am stable. I am joyful. I am just fine. As Sara Frankl said, "My body is brutal, but I am good."

4.) There will be times when you simply can't be happy. Get angry, but deal with your anger in a healthy way. Don't take it out on those around you. Cry it out, then start again. You will have moments, hours, days and weeks when this 'chronic' reality is not ok. It's okay to acknowledge that.

5.) In order to live with a chronic condition, you will do well to simplify your life. This is a great opportunity to use your boundaries, know your limits, and say "no." Your pain and illness will take time. Scale back in other areas and you will find that you are less stressed. Stress can lead to pain, so don't underestimate the value of limiting the things which will cause you stress.

6.) Make time for the things that feed you. Just as stress will negatively impact you, nurturing yourself will benefit your health. So take a walk, paint, sit at the beach, journal, play music, watch a funny TV show, have dinner with friends. Do what feeds you. If you don't know what those things are, try making a list of your activities and then make a note of how you feel during and after those activities. Writing energizes me. Painting soothes me. The ocean inspires me. Being around people too often or for too long drains me. When you have a better idea of what drains and energizes you, take care with your calendar and schedule things appropriately.

7.) To the best of your ability, take good care of yourself. Stay hydrated, get as much quality sleep as you can, rest when you need to, eat nutritiously, and keep your body moving as you are able. Don't assume that your condition is responsible for every symptom you have. Your choices and lifestyle may be playing a part as well. Do not ignore new or worsening symptoms.

8.) Your abilities may ebb and flow. Learn to go with the flow. When I can walk without aggravating my joints, I gratefully do so. When I can't, I don't. It will be worth your while to see the professionals best suited for your condition and work with them to gain the best understanding you can of both how your disease or illness typically present themselves, and what's currently happening with your particular case. My months in physical therapy were very helpful in learning about my particular mobility, what parts of my body were referring pain where, and what would be helpful and harmful for me, in dealing with mobility and AS. Working with a good rheumatologist, and having appropriate tests done has been incredibly helpful too. I find it's far less stressful and fearful to know what's going on with my body than to worry about it and not know.

9.) Create or maintain a support system. When you are able, be there for others. When you need help, learn to ask for it, and accept it. Severe levels of chronic pain quickly cause a sense of isolation. That sense of being alone can be detrimental to your well-being. Reach out!

10.) Cultivate an attitude of gratitude. No matter how bad things are, there is always good if you look hard enough. Keep a little notebook and try to jot down a few things every day that you are thankful for. Jot down beauty around you, compliments you receive, and inspiring quotes. List things that you have -- shelter, food, clothes. Start broad and basic and you may find your attitude changes quickly. In my experience, gratitude, especially when I name it out loud or write it down, creates joy.

I hope something here helps you when you are struggling with your reality. Life still has a great deal to offer, and you are not alone!

A Summer of Overcoming

I winged my way through an astonishing summer. Partly due to an effective treatment plan, partly due to my proverbial wings {essentially: pure courage}, and partly due to necessity. I was as close to thriving as I've been in years, but still, summer was a blur of activity and "too much" for this reflective, home-based creative with chronic pain.

It was a summer I'll cherish the memory of because it was packed and fast-paced, and I did it well. I'm still trying to process 1.) what all happened this summer, and 2.) how exactly I managed it.

I took my girls on day trips by myself -- days I drove and was away from home for many hours. I haven't been able to do that in a long time.

I hiked in the forest, and walked in my neighborhood, and experienced the zoo many times.

I did a road trip.

I navigated driving in places I haven't been before.

I took my kids to a lot of places and have the pictures to prove it.

I reclaimed, rose above, and overcame.

It was good. So good.

And I did hard things. Like saying goodbye to sweet auntie who died of terminal cancer in July. Like supporting a friend who said hello and goodbye to her baby girl in the space of an hour. Like things that were stressful and felt nearly impossible.

But it's mid-September now and I've gotta say:

I'm exhausted.

These exuberant "overcomer" wings are feeling ripped and rumpled. While I cherish the memories of reclaiming my independence this summer, hiking, trips, and an astounding amount of activity; while I look back on that with satisfaction, gratification, and astonishment, I'm desperately in need of rest now.

Whether it's due to seasonal changes (summer morphing into fall), or having overdone it on a pretty big scale, I am battling exhaustion, headaches, nausea, limping, morning stiffness, and the symptom that puts the fear in me faster than any other -- waking with a spine that feels shattered.

I desire nothing more right now than to hibernate for a couple months. To settle back into my cozy nest, snuggle my family, put my feet up, hang up my wings, and recover.

Back to our little cottage. Back to dance classes and learning at home. Back to {hopefully} writing and blogging more.

As it says in the Bible, there are seasons for things. Summer was an overcoming season. I'm hoping fall can be a recovering/rejuvenating season.

What kind of season are you in? How was your summer? Did you do brave things? Did you make great memories? I'd love to hear about it.