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

Joy in the Brave

I’m going home from a nearly three week long trip. I’ve traveled from the west coast to the east coast, from the Pacific to the Atlantic, by plane, car, and ship, and I’ve learned some things about myself and about traveling. I’ve learned some things about life. And it’s good.

I’ve been so eager to share with you all. You strong women who battle hard things on a daily basis and maintain your joy and humor through it all.

You whose child has autism, you who has constant dizziness, you who lost your mother and is still learning to navigate life without her, you who is fighting cancer they say may be terminal, you who lives with severe daily pain, you who fights the urge to starve your body or overeat, you in a stressful workplace;  you who lost a friend, you who is a single mother while your husband is deployed, you who grieves the loss of a child, you who is climbing the mountains of your own war.

You the collective brave.

You are strong women, and it’s my humble pleasure to hear from you, to learn your stories and trade encouragement.

I’m writing this post on a seven hour flight. My daughter is beside me, her arms embracing two stuffed bunnies and a cat. I sip cranberry juice and peer out the window at clouds beneath the wings of this mighty metal bird.

I think of each of you and your stories, and I am grateful. I’m grateful to have gotten to know you, and grateful for your emails and support of Live Art.fully, my cyberspace corner. Live Art.fully is like a little cottage where you’re welcome. You’re invited in for warm muffins and hot drinks in the winter, and lemonade in the summer. You’re welcome to recharge here and tell me your story, and I’ll tell you mine too. As Pooh and Piglet agree, “It’s friendlier with two.”

As I told you in my Attraversiamo post, traveling hasn’t been a strength of mine. I’m not afraid. I know people who suffer from anxiety when flying or driving, and that isn’t my problem, it’s just that I feel off-kilter and unbalanced when away from home and what’s familiar. The last few times we flew, I had a baby along each time, and my idiosyncrasies and weaknesses became amplified by jet lag, time zone changes, and sleep deprivation from a teething baby or a toddler unfamiliar with her new sleeping quarters.

To tell the truth, I was afraid of my own ability to handle traveling so far, for so long, staying in a house with so many people and not having the solitude I’m used to. I was worried about my pain levels and whether I’d be too ill to manage two cross country flights. I didn’t want to be problem for those around me. I didn’t want to be miserable. I didn’t want to make a scene.

It’s with relief and deep gratitude that I share that the trip went well. AS didn’t stay home; I still had pain every day. I still had to manage stiffness and fatigue. Some of that was worse, given the beds that weren’t my own. It was hot where we went, at least compared to what I’m used to, and muggy. I was thankful for air conditioning and ceiling fans in the rental house we stayed in with my husband’s family.

We ate out and cooked in, and rode the ferry and swam in the ocean, and stayed inside out of the mid-day heat some days. We got grape slushies and ice cream, and visited the marina to look at the water and boats, and walked the island and looked in shops.

One day, our last full day on the island, my sisters-in-law and mother-in-law and I went shopping. My knees were bothering me and I was running low on energy. I found a public hammock and “hung out” between stores. Only on an island can you do that, a shopping mall just doesn’t have that same perk!

After shopping we found a restaurant screened in like a porch.

“Four for dinner?” asked the hostess.

“Four for dessert,” we replied, giggling.

It was a special time, sipping our decaf coffee and laughing. We ordered all four desserts on the menu and split them each in quarters to share. It was the day after International Chocolate Day and we celebrated aptly with mocha swirl cheesecake, chocolate chess pie, and chocolate pecan fudge cake. It was glorious, the hours of being with women and only women.

“It’s so much easier [browsing shops] without the kids,” I commented to my sister-in-law.

“I know,” she replied, "I haven’t had to tell you to behave yourself even once.”

I got to meet nieces and nephews, and get to know my husband’s siblings better. I loved that.

I wore a swimsuit and went without makeup and got in the water and did many things outside my comfort zone. And you know what I realized? I realized that there is joy in the act of being brave. Not just relief in getting through it, not just pride in having done it, but JOY on the other side of the fear. You might get knocked over by a wave and get water up your nose and scrape your knees on the abrasive Atlantic ocean floor, but when you come up out of the water, you haven’t drowned. You’ve survived.

If you pass by your chance to be brave, you may miss the unexpected joy that is waiting for you.

Some of this may seem trivial, but another thing I realized is that fear is fear. My fears and discomforts may be vastly different than yours, but they are no less scary and uncomfortable. When I rise above my fears, I am being brave, even if the same thing would not require courage for you. It’s good and right that we celebrate our victories, big or small.

There were hard times and good times, magical moments and moments I was desperate to go home and could not.  It was a long journey. But I found my joy on the other side of being brave, and that was perhaps the most unexpected gift of this trip. It was my gift by the sea.

What's Worth Doing?

A friend posted a quote by Brene Brown today:

"What's worth doing even if I fail?"

Isn't that a wonderful question?

Here's what I decided.

Even if I fail by some standards, completion is success. Not giving up is success. Being brave is success. Trying new things and taking creative risks is success.

Failure is so RELATIVE.

I want to finish my book.

I want to be a wonderful mother.

I want to be a loyal friend.

I want to have a beautiful spirit.

I want to keep building Live Art.fully.

I want to FLY in my own way.

I want to bear pain and illness with strength.

I want to always be Brave Enough.

I never want to stop growing.

I want to inspire.

What do you want? What's worth the effort to you? How do you define success?

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?