Choose Joy: Book Review

Getting to know Sara through her blog changed my life. We were both bloggers in our 30s when we met in 2009. I was captivated by her bouncy red curls and her infectious spirit. Faith was another thread that wove us together. At the time, Sara was living with Ankylosing Spondylitis, a chronic inflammatory disease that attacks the spine and joints, and I was being tested for it. She was gracious to reach out to me during that time. Over the following couple of years, I was diagnosed and both of us experienced worsening pain and quality of life. There were many nights of severe pain, when I would lie awake in bed and re-read her blog posts. Sara was one of two bloggers living with severe health problems and pain that inspired me to adopt an attitude of joy, gratitude and positivity. I credit Sara with showing me how to live life with a debilitating, painful health condition with no cure. Joy has been as much a part of my toolkit as any treatment program. I firmly believe that without knowing Sara and reading her blog, my life with AS wouldn’t have been as manageable as it has been.

Sara passed away from complications in 2011 and I grieved along with so many others who knew her. A light went out when she died, but her candle of joy had lit so many others’ that her legacy has created a glow that burns brightly still.

That’s why I was so thrilled when I heard that Mary Carver, another of Sara’s blogging friends, was working with Sara’s family to put together a book of Sara’s writings. It was titled in tribute to Sara’s motto: Choose Joy! I knew this book would help continue to spread Sara’s remarkable legacy of choosing joy.

I have no words to express how thankful I am to Mary for putting this book together. Putting Sara’s blog posts into book form, while not taking over the spotlight, must have been no easy task, but Mary masterfully pieced her own thoughts, explanations, and transitions together with Sara’s words in a way that only highlights Sara’s writing voice. I was privileged to be part of the Choose Joy Book Launch Team and receive a copy of Choose Joy to read in advance.

Faith was a big part of Sara’s life and outlook, and as such, references to Heaven, God, and an eternal perspective are woven throughout Sara’s book. Whether you are religious or not, I think reading Choose Joy can be a deeply life-altering experience that will leave the reader thoughtful for some time to come. 

Although Sara’s circumstances were extreme, I believe anyone going through challenging things (be it illness, pain, isolation, loneliness, or loss) will benefit from Sara’s words.

You may very well find your perspective changed for the better from reading this book.

Choose Joy: Finding Hope and Purpose When Life Hurts by Sara Frankl and Mary Carver releases next week, Tuesday, January 5, 2016 from Amazon, Barnes & Noble, and other booksellers. You can pre-order the Hardcover or Kindle versions on Amazon now here.

For more information on the book, you can go to the Choose Joy Book site.

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}

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.

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.

Wings: The Perfect Accessory

If you follow Live Art.fully on Facebook, you've no doubt noticed a theme over the last months.

WINGS

What does it mean when I say Use Your Wings, Rest Your Wings, Put On Your Brave Wings?

A couple of months ago, I had a week where my sacroiliac joints (the joints that connect your pelvis to your spine) were really flaring. They were swollen, which made them feel as if they were trying to jut through my skin. The pain was impressive. It was a week of Keep Going, just like almost all weeks -- do the laundry, do the dishes, clean the house, vacuum the floors, drive daughter to dance, pick up daughter from dance, take other daughter to the library, get groceries, rinse and repeat. 

Sometime during that week I realized that it felt like giant metal wings were trying to grow out of my back. Perhaps that's graphic, but as a writer and as someone with chronic pain, it often helps me to put my pain into words. I find it helps separate the pain from my self, if that makes sense.

As you can imagine, having metal jut out of your body isn't a good feeling. I've had this description crop up even in my sleep. Once I was having severe chest pain in my sleep. I dreamed that I was in a lot of pain, lifted my shirt and there was a bunch of metal that had erupted through my chest. In the dream, I very calmly noted this wasn't good, went to a doctor, told them I had Ankylosing Spondylitis and showed them my metal/chest. Ha!

So back to the Giant Metal Wings week, I realized that if instead of thinking, "My back is in such pain!", I thought of the pain as Growing my Wings, I could handle it better.

I wrote a little poem that day which included a line that said "my back grew wings." It was a symbolic, positive way of expressing my pain without spelling out the horror.

Famous artist Frida Kahlo was severely injured in a trolley accident in college and spent the rest of her life battling severe pain. She's quoted as saying, "Feet, what do I need you for when I have wings to fly?"

That quote has become one of my favorites. When I'm having trouble with my mobility, I tuck that in my proverbial pocket and choose to "fly" for the day. It then doesn't matter if I'm in pain or if my feet aren't working properly or my hips or my knees, because I have wings. It's a mental game really; it's how I {Rise Above}. I find these mental games, and word phrases and images are a vital part of my pain toolkit. Maybe it's because I'm a writer and words hold such power for me, but I find that if I can just determine the right way of looking at things, I can soar.

Now when you see things in my art about flying, soaring, or wings, you'll know what it means. For me, more than anything, it's realizing the power of a positive attitude, and putting on that attitude like armor.

I may wear lounge clothes, a dress, or jeans, but I often add an invisible accessory, my wings!

The Writer in the Rheum: Fighting to Retain My Identity with Chronic Disease

For some reason, I'm shy about discussing my treatment choices in public forums such as Facebook or my blog. I believe treatment choices are highly personal, and tend to be controversial. I have friends and family who believe only in natural/alternative treatments, I have friends and family who believe only in medical treatments, and I have friends and family who believe in a combination, or integrative, approach.

Thankfully, I also have some friends and family who believe that the person effected should be the person to make the decisions about their own care, regardless of what they personally would do.

I still don't feel comfortable writing about my choices in regard to my treatment plan, but maybe someday I will. What I would like to say, is that a couple months ago I switched things up significantly, and about nine days ago, I started feeling better.

I have said many times that no matter how much pain I'm dealing with, I want to choose not to suffer. I believed in that concept strongly, but have to admit that the last month or two has been rough. My quality of life was shot, my pain was raging out of control, and morning stiffness? Let's just say that on Thanksgiving, it took about the same length of time to "thaw out" my spine, as most people spend thawing out their frozen turkeys. I was in a place that felt unending. I felt almost physically sequestered from my own life and my family. I wasn't enjoying my life, and I was clinging to the concept of hope -- that maybe something could still turn my life around. But, to be honest, I wasn't sure it was out there.

My spinal pain was nearly unbearable. I woke every morning feeling as if someone had broken my back in the night. I could barely move, I couldn't bend, and the pain was reaching the upper limits of my experience.

I spent a great deal of time with a question rattling around through the haze in my brain:

Is there a writer in the rheum?

I am a writer. Other than being a mother, it's my highest calling, highest pleasure, and how I identify myself.

I was losing my ability to hang onto the dream of ever finishing my book, of ever writing articles again, of even getting back to this blog. I long to inspire others to face their lives with creativity, positivity, and an authentic lifestyle of thanksgiving.

But I was drowning. I have spent months fighting to stay afloat, fighting not to go under.

I felt I was in a cage of severe pain, and it was becoming harder and harder to function and interact.

I was afraid that I was losing my fight to maintain any quality of life, and that my dream of finishing my book, and starting new projects, would be unattainable. I was afraid that with a rheumatic disease raging out of control, my "writer" self would be lost.

I really don't know how much more I could have endured without some part of me slipping away forever; without losing my smile, my ability to be a friend or a good mother, or a writer.

I'm grateful beyond words (and as I've said here, words are kind of my thing) to say that I'm doing better. Just as I didn't know how to fight my way to the surface one more time, I'm doing better. I don't know if it's the change in treatment plan, or if I was in a brutal flare-up that is ending, but whatever the cause, I am unspeakably relieved.

A week ago we went to a Christmas concert. During intermission, I walked with my six year-old up and down three flights of stairs. I couldn't have done that before. I'm still excessively tired, I'm still running low-grade fevers frequently, and pain is still present, but the glass wall separating me from my life and my family has shattered down. I can touch them now, I can interact again, and my mind is starting to awaken.

I'm more committed than ever to write.

Because, you see, this is my story. It's mine and it's true. And maybe some part of my difficult reality will ease some hurting part in you.

Please don't give up on your dreams and fighting for your best life. I made a choice to fight, and I'm so grateful to be emerging from this dark place.

Between Hope and Joy

{Original Art Journaling by Jennifer LeBlanc 2012}

I've been in really rough shape. You know that if you read this blog much. 

A month ago, after a full spine MRI done to evaluate my Ankylosing Spondylitis, I was told that my MRI had shown something concerning. They recommended I have another MRI. If they saw what they thought they saw, they said it was potentially serious and unrelated to AS.

It was sixteen days of waiting and anxiety before the 2nd MRI. It took 90 minutes, and it was difficult. The pain had been at an all time high, and lying on a flat, hard table and holding extremely still for that long was really hard with AS.

I tried to breathe evenly and I prayed. I thought about my girls and my life. I thought about what life might be like with the serious disorder they were trying to rule out or confirm. I thought about how much worse my life could get, and how hard it already is. The pain was bad but I didn't want to blur my images or make another MRI necessary, so I held completely still and bore it.

It was dark outside when my husband and I drove out of the parking garage at the building where I had the test. I knew news would be coming in the next 24 hours -- news that might make me feel extreme gratitude that "all" I have is AS, or news that my life was going to change yet again, and not in a good way.

Throughout the 16 days I told very few people. I didn't want to worry anyone. But it made it difficult to journal or blog or even update my Facebook status. I was holding my breath. My last post was during that time. The fear was so strong.

The day after the MRI, I received two sets of news. One, the serious disorder they thought they saw I do not have. They ruled it out. Just to give you an idea of the fear I was dealing with, one of the potential results of that disorder is paralysis.

Relief.

I also found out I have more issues with my spine than I previously knew. That news was hard for me to process, but two+ weeks later, I'm at peace with it.

A lot has been changing in my life, and I'll post again soon. But for now, I've come out of the dark, and I wanted you to know.

I'm somewhere between hope and joy, and it feels tremendous.

A Legacy of Chronic Joy

A year ago today the world lost a bright light. A family in the Midwest lost a daughter and sister. Many of us in the blogging community lost a friend. I’ve written about her before. Maybe you read her blog and ‘knew’ her, as I felt I did. Maybe you have never heard of Sara Frankl, also known affectionately by her family and blog readers as Gitz.

Long before I blogged or knew I would be diagnosed with Ankylosing Spondylitis, I stumbled upon a blog written by a curly-haired red head with a great smile. I was intrigued immediately to read that this young woman, not much older than I, had AS, a chronic inflammatory disease that attacks the spine and joints.

I had known about AS since about the age of seven, when my dad was diagnosed with it. I liked to say the words, the many syllables tumbling off my tongue. I liked to wow my elementary school classmates with my ability to spell it.

What surprised me about Gitz and her diagnosis was that I had always heard the diagnosis my Dad had was a men’s disease. Women supposedly didn’t get it.

I had first had trouble with my ankles in early high school. A year or two later, my hips began to be a problem. I can’t remember not having back pain, but I thought that was normal. I thought everyone’s back hurt.

During my pregnancy in 2006, with my daughter Natalie, the pain became significant. I struggled to walk, sleep, dress, or get in and out of a car. The doctor thought it was Round Ligament Pain. I gained a lot of weight and when Natalie was born at 38 weeks, 4 days, she was 9 lbs 8 oz. When the epidural kicked in, it was the first time in my pregnancy that I hadn’t had pain.

During Natalie’s baby years, I was breastfeeding, partially co-sleeping, potty training my older daughter, and doing all of the tasks that need to be done with two small children and a household. I chalked my back and neck pain up to that. “I must’ve slept wrong,” “I shouldn’t have given Hannah a horsey back ride,” “I’m not sleeping enough for my body to heal from daily wear and tear.”

It was 2007 or 2008 when I began to wake with a stiff spine. This, I couldn’t dismiss. Pain, well, I’d had that for years. But stiffness? Not being able to bend properly or get out of bed easily? I was only in my late twenties – this couldn’t be normal.

It wasn’t long after that, those months of relying on a hot shower and Ibuprofen every morning to get me moving, before more symptoms began – low grade fever, extreme fatigue, my hips catching and giving out on me, pain in my feet and wrists, limping when I walked too far. And it felt like if I could get something, I did. I had shingles, then bronchitis. I coughed till I vomited and my ribs were so sore I felt like I’d been in a car accident.

In fall 2009 I had my first autoimmune flare. I didn’t know what was going on, but knew I felt terrible, and when it happened again the next spring, I began to think the word ‘arthritis.’ It was my older daughter’s Kindergarten school year. I was miserable and pushing through symptoms and fatigue every day to function and raise my daughters.

It was June 2010 when a chiropractor I was seeing said ‘Ankylosing Spondylitis.’

Later that month, my primary care doctor listened to me for 20 minutes before saying, “Definitely something autoimmune. Could be Rheumatoid Arthritis, could be Ankylosing Spondylitis.” She ordered the blood test for the gene HLA-B27, a gene strongly associated with spondyloarthropathies, the family of diseases that include Ankylosing Spondylitis.

I tested positive for the gene.

In September, a rheumatologist spent two full hours with me, and diagnosed me with AS.

Women do indeed get Ankylosing Spondylitis.

I spent a good portion of 2011 worrying about my mobility and wondering if I would eventually need hip replacements. I had to quit my outdoor walking routine. It was by far too hard on my joints. I still miss it.

I’ve gotten a little better with treatment, but two years have passed now, two years last Saturday since I was diagnosed, and I’m also worse in some ways. That’s the nature of this disease – to progress, to debilitate.

I have pain every day. I don’t know what pain-free feels like, because it’s been too long since I’ve experienced it.  There are many mornings, that I wake up in so much pain, I can’t even sort out where all it’s coming from. It hurts to walk most of the time. Sometimes it’s more severe and sometimes less, but the fatigue is always present, and if I can manage to function through the day, I will almost always need to crash after my girls go to bed.

My spine is in constant pain, sometimes I can’t sleep due to pain, and sometimes I have nerve pain down my right leg.

I’m thankful every day for many things that make my life easier and more comfortable. Hot showers, electric heating pads, knee braces, arthritis gloves, clogs that alleviate arthritis pain in my feet, slippers, my bed and recliner, memory foam pillows, and once in a while, my cane.

I’m in my early thirties and this is my life. It’s not the most difficult physical existence by any stretch, and while it can be life threatening, it isn’t often that AS is a fatal disease. I’m thankful for all of that. I’m thankful for what I can do.

I still worry about my future. I wonder if I’ll be in a wheelchair at my daughters’ graduations; if I’ll have my hips replaced by the time they get married.

I wonder if my spine will fuse.

I’ll tell you what helps the most. More than pain meds or physical therapy or resting or mobility aids, GRATITUDE helps.

My discovery of listing what I’m thankful for and its ability to create joy and happiness occurred years before I got sick and years before I ‘met’ Sara Frankl online. But in the months waiting for diagnosis, many sleepless nights I turned to her blog for wisdom and inspiration. And what she wrote, again and again, was that joy is a choice and life is a gift, and that even in the pain, she would choose joy.

I’m thankful for the gift of Sara Frankl. And today, one year since her death, I used my courage to go see a new doctor and try to fight for better quality of life so I can shine brighter and have more energy to leave my own legacy.


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You can read Sara's blog at: gitzengirl.blogspot.com

Attraversiamo: On Traveling with Chronic Illness

Attraversiamo. In Italian, it means "cross over."

That's exactly what we did last week. My husband and our two girls and I, we crossed over the country.

We traveled from sea to sea; from the northwest to the southeast. We started  in a region of tall, green trees, rain, and coffee and ended in a region of bugs, humidity, and sweet tea.

This journey far surpasses any I have taken in years. It consisted of two cross-country flights, a rental car, two nights of hotel stays, two weeks of beach house stay, and two days of driving.

Even before chronic illness reared its ugly head, traveling was not my strong suit. I do well with home, with the familiar.

Months ago, when we first began planning this trip, I began trying to change my way of thinking. Instead of thinking of worst case scenarios that could happen while traveling, I began to consciously look forward to specific things -- the beautiful pictures I would take, my girls' excitement to see a new place, getting to know my nieces and nephew, and spending time with my husband's family. I allowed myself some new stickers and papercrafting supplies to document our travels. Instead of feeling stressed, I tried to change that feeling to excitement.

It didn't completely change my normal ways of thinking about travel, but it helped.

In the airport, being pushed in a wheelchair to save my hips and knees, I remembered the reason for this journey. Gorgeous piano music in the airport was playing, "It is Well With My Soul."

In the middle of a long day of travel, somewhere in Nevada, I hit the wall. Going on about 1.5 hours of sleep the night before, I was exhausted, hurting, and still had hours to go before I could find a comfortable chair or a place to lie down. I began to cry and felt myself slipping into my old ways of thinking: I'm not good at traveling, I can't do this, I should've stayed home, I want to go home.

I went in the ladies' room and cried for a few minutes in a stall, and then I dried my eyes and reached way deep within for strength and inspiration. I remembered that I am Brave Enough, and we trekked on.

And we made it. Here I am in the land of bugs and sweet tea; on an island with beautiful warm water.

Here I am, crossed over.
I call it a gift -- the opportunity to do this trip. I call it an adventure. And for myself, I call it brave.

Attraversiamo -- how will you "cross over" your fear?

Fighting to Thrive

Have you ever felt yourself drowning in the chronic pain & illness sea?

That's where I've been the last few months. The fatigue that accompanies my disease had passed the point of ridiculous. I was so exhausted that I could barely function.

Honestly, the whole summer has been quite difficult in many ways.

But there is light now...

I finally kicked my way to the surface enough to call my primary doctor.

I treaded the proverbial water while I had blood drawn for labs and waited for the results that offered hope... my thyroid, which hasn't been behaving itself for at least two years now, had acted up in a new way.

Hope came in the form of a new thyroid supplement. So now every morning I swallow two tiny pills to help my thyroid know to do its job.

Hope came in the form of a call that said, "The doctor is happy to see you. He can see you in September."

So there's treatment now, and there's new options and expertise on the horizon.

I don't feel quite so much like I'm drowning now.

This is for you: the one who feels she's drowning. This is to say, "Please keep fighting."

You have a beautiful life to live. You are a unique gift to the world. So please keep fighting to live your best possible life.

That's what I'm going to do. And we'll do it together.

The "Chronic" I Want to Be

We had a big weekend, and Sunday afternoon I collapsed into rest mode. I thought I'd be okay if I got off my joints for several hours, but Monday I was even worse. My knees were on fire, my hip was in such pain I was nauseated, and I had no energy. Some with lupus and other autoimmune diseases call themselves "spoonies," in reference to the Spoon Theory written by lupus sufferer Christine Miserandino. In the theory, she attempts to explain to a friend how energy works when you have chronic fatigue caused by the battle of chronic inflammation and pain in a body like ours. She explains that at the beginning of every day you are given a handful of spoons and each task takes one or more spoons. Some days, she elaborates, you wake with only one or two spoons. It's those days that are killers, because you have to make deliberate choices about what's most important. Do you want to exchange your one "spoon" of energy for a shower? Or would you rather use it for running a load of laundry so your family has clean clothes to wear? 

Let's just say that Monday and Tuesday I was running on zero spoons. I rested as much as I could, around taking care of my daughters, and tried to fight the mama-guilt and the worry that comes with flares. I coached myself that a flare does not necessarily mean "new normal." Last winter, for example, I was in a long flare. I began having new symptoms like nerve pain down my leg. I got a cane and used it off and on. I spent a lot of time in my bed. I developed a new level of appreciation for things like electric blankets, wedge pillows to prop myself up, pajamas and pretty-smelling lotion. I worried a lot that my disease, Ankylosing Spondylitis, was progressing and that this would be my "new normal."

But finally, eventually, the flare eased, and I was back to my "old normal" -- battling pain, stiffness, low-grade fevers, and fatigue regularly, never feeling "good," but walking without the cane, rarely having the nerve pain, and not in bed nearly as much.

This week I worried. I worried that I, in this condition, am not Good Enough. I worried that my fatigue might overpower my will power, and wondered what life would be like with never ending Zero Spoon days. I worried that I would not be a good enough mama, a good enough (homeschool) teacher, a good enough anything.

Wednesday I was still exhausted and hurting and limping on that hip and those knees, but I had more spoons in my bouquet and I was able to run a bit of laundry and vacuum and tidy up the house. We had dinner with friends, although I didn't have spoons left to apply makeup or do anything with my hair or change out of comfy lounge clothes.

Today I made it out of the house for almost three hours. I took my girls to the park to enjoy the warm sunny day.

We did a couple of errands including picking up food for our kitten Mitzy, and checking out armloads of books and DVDs from the children's section of the library.

We came home and I finally made good on something I've been wanting to do with my girls for a couple of weeks: bake cookies.

Natalie helped me unwrap sticks of butter. Both girls helped me roll dough in sugar. We baked till barely golden brown and enjoyed a couple with squaty glasses of milk.

We waited till they all cooled and filled up our new-to-us adorable Goodwill cookie jar adorned with a kitty, bunny, bear and mouse.

By the time the oven was turned off, my spine was screaming in pain. I was almost cross-eyed from fatigue, but so happy to have mastered a day the Old Me did regularly. So happy to make memories of park fun and cookie baking with my girls.

I don't know what tomorrow holds. I don't know if at some point, the New Normal I fear will catch up with me. But I know that today we lived and loved and did what we could. I also know that without resting for a few days this week, I wouldn't have been able to do today. So this isn't a post to say, "Go ahead and use the energy you don't have because the memories will make up for it." No. We must become wise. We must know our bodies, know our diseases, know our triggers, and know when the pay off is worth it and when it's not.

Today I'm thankful for the energy to bake cookies with two little girls who call me Mama. And if I don't have any energy tomorrow, I will try to remember not to worry. I will do what I must and rest when I can and be thankful for two little girls who cuddle with me when I'm "down" for the day.

I will keep working on releasing expectations, and separating my sense of worth from what I am able to accomplish. Spoons or no spoons, I will be aware of what I am grateful for. Because I fully believe that what we are grateful for becomes enough, and gratitude creates the joy and peace we crave.

When all is said and done, I want people who knew me to say that more than chronically ill, more than chronically in pain, I was chronically grateful.

That's the kind of "chronic" I want to be.

Many Blessings: Looking Back and Looking Forward

I remember shopping for rubber stamps in the months before my diagnosis with Ankylosing Spondylitis in 2010. I wandered the aisles of Craft Warehouse and selected a package that inspired me. The stamps were of cherry blossoms and soaring birds, with words like {Many Blessings} and Bloom and I decided right then and there in that aisle that I would do just that.

I decided that no matter what came with my health and my joints and ability to walk, I would keep growing and live joyfully and I would try to live my life in such a way that people watching could be inspired.

Because we all have battles, don't we?

Today I was doing some journaling. I got out some stamps and ink pads, and stamped the words from that package of stamps on heavy ivory pages and I remembered that time so clearly. I remembered the fear and the worry, the new symptoms that popped up frequently (autoimmunity is like a circus, you just never know what new and colorful thing will surprise you next), the months between when my primary care doctor said she was certain I had AS and 3-4 months later when my rheumatologist confirmed the diagnosis.

I remembered reading posts by Sara Frankl, and being strengthened by her attitude of daily joy regardless of the circumstances. I filled myself that summer, reading inspiring things, feasting on outdoor beauty, and journaling my own feelings and declarations that no matter what came, I would grow and I would fight and I would live my best life.

For me, it's important to look back and remember the milestones. It's important to regularly think about the choice and commitment I've made to find a way to weave beauty, inspiration, courage and my dreams into my reality.

I'm thankful for books and blog posts that have kept me inspired. I'm thankful for the example of how others fight their battles.

I feel buoyed by the realization that I have done the best I could so far, and that I have kept a joyful, thankful outlook. I'm thankful for everything and everyone and the One who have helped me do that. I'm also thankful for grace when I can't fight for a day or two and need some time to just grieve what the reality is.

I choose again today to continue to live with as much courage and strength as I can muster, to offer grace to those around me and to myself when needed, to use my words to heal and uplift, not to harm.

I choose again to keep fighting to make my dreams reality, even when my reality is heavy and hard.

Brave Enough

Over the weekend, I had an unexpectedly severe flare-up of pain related to the chain of surgeries I had following my miscarriage years ago.

It's amazing how that pain can take me right back to the raw grief of losing our baby Jordan. It's like scent... how certain smells will put you right back in your grandmother's kitchen on Christmas morning.

I was in terrible pain Friday night and was unable to rest until about 4 in the morning. I got up Saturday, desiring to go to church with my family.

I was emotional, as I always am when I've been in that level of pain -- that pain that flashes me back to the reason for the surgeries. The pain that represents sweet beginnings and possibility scraped out, leaving years of physical and emotional complications.

Our daughter Hannah is an old soul. She is a compassionate girl who has grown up with a Mama who struggles with pain. It hasn't always been something I can hide from her and she has consistently handled my rough patches and my heart with a tenderness that astonishes adults.

This is the girl that told me when I was in the dark spaces of mourning Jordan, "Grief is like when you get something in your eye, and you have to cry and cry to get it out." She was 4 years old.

This is the girl that curled up next to me when the pain literally dropped me to the floor and smoothed my hair while saying, "Medicine takes a long time to kick in, sweetheart, but it will kick in." She was not yet in Kindergarten.

Saturday morning, I hugged her, apologizing for my tears as I explained to her, "Mommy had a bad night."

"It's okay, Mom," she told me, hugging me back. "I think God chose the right children to have a pain mama. Me and 'Nally' are okay with it. We're brave enough to have an arthritis kind-and-loving mother."

We're brave enough...


With tears in my eyes, I tucked away her reassurance and that phrase into the pocket of my heart. Brave enough. And I decided that I could be brave enough too. I took my girls to church, and I smiled through the pain. Not to discount it or try to hide it, but because life is beautiful and life is good. Every day, even the hard, is another chance to love and to form relationship and community with those around us.

Let's be brave enough to do that.


Let's be brave enough to do hard things, and not give up, and rest when we need to, and make memories regardless of our current physical ability, and encourage those around us, and grow. Let's be brave enough to keep on when it would be easier not to, and to believe in the good when good is hard to find.

Hitting the Pavement {& Choosing Joy Anyway}

Last post, I wrote about chasing the pavement. How it felt to fly (walk halfway normally after limping, hip pain and occasional cane use). I was as "unflared" as I get these days, and living life to the fullest.

But by that night, I was no longer flying, but instead falling from the sky, and hitting the ground (aka my bed) hard.

THUD.


How that hurts, the hitting of the pavement when you've just been chasing it.

I wasn't sure if I was flaring or had just overdone it. My hands, feet and hips were wrecked. So I rested, again, tears trying to sneak out.

I forced myself to apply pen to journal page:

Deflated today. Have overdone it and thrown myself back into a flare, it seems. I'm sad to feel like this again so soon. I get relatively used to it when I'm in it, but slammed back to the ground after flying is brutal. The sudden shift in ability, energy, fatigue and pain levels is just plain rough.


Have to allow myself a bit of grief, some hours to process and adjust back to what is, unfortunately, pretty much my normal now.


Giving myself some grace today. I know I'll adjust soon, but for today I'm just really sad to be chronically ill.


It took some days but it seems I haven't completely re-flared myself, just overdid it. I'm thankful for that. I'm thankful for the memories of getting up early, walking quickly, watching the sunrise, taking pictures and listening to music in my neighborhood.

Maybe the memories are worth the pay off. That's something I'm still trying to decide.

--------------------------------------

Today? Looking forward to (in)RL!, (in)courage's first virtual conference event. I've written about Sara Frankl here before. Sara, our gitzengirl, was homebound due to Ankylosing Spondylitis and severe complications, including to her lungs. She died in September of last year, just one year and 2 days after I was diagnosed with the same disease.

I will always be grateful for her example to Choose Joy despite circumstances, and I look forward with great anticipation to meeting her one day. Today the (in)RL conference agenda includes a portion dedicated to the memory of our community's sweet Sara. There will be tears. And we will then remember what we are here to do: live fully, live well and with intention, and choose joy despite our abilities and our circumstances.

I can do that. By the grace of God, one day at a time, I can do that.

Have a great weekend, my friends!

Chasing Pavement

If you've been a reader of this blog for long, you know that I love walking. It used to be a routine of mine -- my "artful walks."

You also know that I have been unable to walk very much since I developed Ankylosing Spondylitis, a form of autoimmune, inflammatory arthritis that attacks my hips and spine, and many other joints.

Recently I started feeling better - closer to my old self than I had in a long time. I could walk without limping and without a cane. I only needed to be in bed to sleep, I was living life awake, out loud, and enjoying every minute of it. I knew I would eventually flare up again, so I determined to make as many memories as I could before landing back in a flare.

Yesterday morning I woke up at 5:45 wanting to walk. I got dressed in the dark, trying not to disturb my husband Jonathan, grabbed my iPhone and headphones, laced up my walking shoes I haven't worn in maybe a year, and headed out. I saw the sun rise, took pictures of beautiful things I came across, walked with long, happy strides, and listened to Pandora. My soul was beaming and my face probably was too.

I walked well over a mile, which felt so familiar even after being out of my walking routine for so long, and I tell you, it felt like flying. 

One of the songs that came on during my walk was Chasing Pavements by Adele. While most of the lyrics had nothing to do with my life or my walk, this line stood out to me:

Should I give up,
Or should I just keep chasin' pavements?

I felt so free and alive and filled with hope -- flares would come again, but so would times like this and I could rest in flares, knowing that somewhere around the corner, was another chance to fly.

to be continued...

Flying Free

I can't apologize for not being around for the last couple of weeks. Since I came out of my last flare-up that felt never ending, I have been playing catch up, organizing, and squeezing all I can out of our days and drinking it down like a glass of sweet, fresh-squeezed orange juice.

Just in the last few days, we've relished a trip to the park, a family walk, a little hop-skip out of town for Chinese and a bit of shopping, Redbox movie night, fresh air and sunshine, working on my book, baking cupcakes and cleaning the house.

I'm wearing a big smile and saying Thank You repeatedly, in writing, in prayer, in my heart of hearts, knowing the One I believe gives good gifts hears me.

I'm ALIVE. I'm AWAKE. I'm WALKING {with no limp}. With no limp and no cane, walking feels like flying.

There are little moments of sadness. Moments when the pain rears up, my hip catches, the fatigue slams, and the nerve pain flares. Little moments of a big reminder: I'm not the same as I once was.

But mostly, I'm just flying.

So until I land, I just wanted to hover over this blogspot for a moment and let you know how it feels to be free. It feels like possibility. Like hope. Like a gift. 

I hope your today is a gift.

Good, Bad & Ugly: A Weekend to Remember

It's been one of those good, bad and ugly weekends.

Friday morning I woke up with my back out, and having that on top of the normal AS spine and hip pain was highly unpleasant. I couldn't move much without it spasming. I couldn't sleep well.

I tried hot baths with Epsom salts, my TENS unit, ice, heat, meds, Biofreeze, stretching, everything I could think of. No luck.

Saturday began with one of those days I dread -- grappling in pain, nauseated, crying. I missed church with my family and then my husband was called out for work.

My awesome parents came to the rescue, volunteering to take both girls for the afternoon. My husband came home. My older daughter ended up going to Grama & Papa's for the whole afternoon which morphed into a sleepover. Usually the girls stay at Grama & Papa's together, so going alone was a very special treat for our 8 year-old.

Jonathan and I took the opportunity to have a special evening with just our youngest, reminding me of the years before she was born when we had one-on-one time with her sister.

We got pizza, stopped at Redbox, and made a special bed in the playroom for Natalie, at her request. She stayed up late and we giggled and munched a chocolate chip cookie together in my recliner and then we tucked her into her little makeshift bed with her favorite blankets, stuffed bunnies, nightlight and music.

Jonathan and I watched another movie together in bed, as I again struggled to find a way to be comfortable.

Even though a good share of the day had been full of fun and sweet moments, I went to sleep near tears, discouraged and weary of the constant fight with pain and illness.

Today dawned a new day of light and love. My back is still out, my joints scream if I move in certain ways, my fingers are swollen, my hips are throbbing and pain radiates down my legs. But I feel hopeful today.

Some days I just can't fight. That doesn't mean I'll give up. It means I'll endure as graciously as I can until the next day, when I will search out inspiration and good things and by God's grace I will fight again. I will fight to balance this chronic disease and its daily attack on my body and my life with my dreams and goals and desire to make this life legendary.

I will work to leave a legacy of faith, creativity, and intentionally loving well.

Popcorn, Canes and Contentment

I'm in a flare (maybe the last one didn't end, as my husband says). I've been using the cane again and spending as much time as possible in bed.

My husband Jonathan is a tall French Canadian with broad shoulders and an equally big heart. Tonight I was in bed with my older daughter. We were just hanging out, discussing important topics. While she designed our dream house on paper in pink ink, I did some Windows Shopping (what I call shopping online when you're not intending to buy anything...) So she's sketching out our new and improved home and I'm perusing new bedding for our new and improved bedrooms, and out in the kitchen Jonathan and our younger daughter Natalie are making popcorn.

Pretty soon I hear him say to Natalie, "Okay, I think we're going to go eat in Mommy & Daddy's bedroom," and here come my sweet 5 year-old and her handsome daddy, carrying a tray full of popcorn, bowls and our family's favorite toppings -- brewer's yeast (aka nutritional flakes) and grated cheddar. A stool for my laptop and a box of wet wipes and we're ready. All four of us get arranged in the Big Bed and we put on a movie, dim the lights, and start munching popcorn. Pain or not, I'm content.

It's hard to feel so poorly so much of the time. The pain can be really scary; it can whittle me down to an exhausted, impatient version of myself. I worry sometimes not only about my future, but about what this may be doing to my daughters and my husband.

I read a quote that says something like children who are raised by a mother with crutches will learn to walk with a limp. The concept haunts me as I limp out to the kitchen this morning, holding onto both hall walls for support as my oldest runs unprompted to bring me my cane.

The new nerve pain is scary and hard to deal with. A simple grocery shopping trip reminds me how bad I am doing as I begin to limp and have to get my folding cane out of my bag. People look, confused, at this thirties mama who is wearing boots and a skirt, holding hands with a little girl and yet clutches a cane and walks with a limp. It is easy to just look down and not be bothered by their inquisitive stares, but I try to look up and smile at them instead. This makes me happy, because I am showing them that while I may walk with a cane, I am just fine inside.

Before I go to bed, I go into the bedroom my girls share, and check on them. I love this quiet time every night, the maternal feelings that wash over me as I smooth hair out of their faces, tuck them back in properly, pat their sweet little selves. Tonight I feel a lump form in my throat and I think, "If the trade off for all of this love and happiness in my life is AS, I will bear it gladly."

Writing Conference Weekend

Last Saturday I spent the day at a one-day conference put on by the Oregon Christian Writers. While the speakers were good and the conference, well organized, what I most enjoyed was simply being in a huge room full of writers all day. I loved meeting other writers, hearing about their projects, whether in progress or just an idea, their published books, and perhaps above all, their writing process.

I loved batting around ideas about how to stay focused, how to make time for writing when you have a full life, how to set priorities and boundaries, and how to take care of yourself so you can do your best work.

Another wonderful part of the weekend was exchanging contact info with other writers and bloggers so we can stay in touch and cheer each other on.

Although the conference was just one day, I took the opportunity to turn it into a writing retreat, by book-ending the conference with a hotel stay the night before and night after. This way I had time to write, enjoy some solitude and process what I learned before it was time to go back home.

Have you ever experienced a rapid perspective shift when you get out of your normal routine? I sure did this weekend. I realized that trying to run away from my health problems doesn't work, I haven't made it up, it's real and I must find a way to acknowledge it and take care of myself even in the midst of dreams and travel.

I couldn't believe how tired I was. It was really frustrating, to the point of tears, how much time I had to spend resting instead of writing. It was great to get some writing done, and I was thrilled to enjoy the conference, but I had to realize at one point that if I don't take care of the writer, the writer won't be able to get any work done.

Sometimes when we dream, at least I know this is how it's been for me, we imagine a fantasy world without factoring in challenges or realities. I realized a few years ago that dreams up close are less glossy. When a fantasy becomes reality it's wonderful, of course, but it will include things you didn't count on when you were dreaming. My writing conference/retreat fantasy became reality this weekend. It was wonderful. It also included the reality of pain, a short night due to pain, exhaustion and some tears. I left my house in the pouring rain with a crying daughter. These things are reality.

I think it's important to remember when dreaming, that while your dream can be wonderful, perhaps even better than you dreamed it, it will also be real life when it comes true. Maybe if we know that going in, we can create reasonable expectations.

Here are some of the realizations I had while away:

I am very blessed to have supportive people in my life who help me make dreams come true. Special thank you to my husband and my parents here.

Not all days will be word count days. Some days will be resting days so that I can create another day.

Continuing to make space in my days for creativity and for my writing will yield results, even if it's just a bit of time consistently. Consistency creates results.

If you have a dream, what's stopping you from making it a reality? Get real and honest with yourself here. Write it down and process it. Then figure out the first step. For me, one of my first steps was that it was time to see the doctor again and try to implement a new treatment plan, so I can be living a more full and vital life.

I have to take my own dreams and goals seriously before anyone else will. Similarly, I have to ask for what I need and want.

I hope you join me in taking your dreams and goals seriously, and figuring out the first, or next, step to pursuing them. No one's going to do your work for you. You make it happen! And when it does, give yourself a bit of grace with the realities, and don't forget to say thank you to those who helped you along the way.