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