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.

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


  1. You are leaving a beautiful legacy, Jennifer. Just like Sara.

  2. Simply beautiful. And thank you for sharing your journey with us - we are all better because of it. You are an inspiration, a mentor, a women of courage...and most definitely a blessing of joy. Thank you.

  3. Hi Jennifer,

    I wanted to introduce myself. I've been reading your blog for a couple of months now and through you I found Sara's site via one of your posts made during the last week of her life. I'm so grateful her family has left her site up. I'm reading as much as I can, as quickly as I can in case they decide to take it down. I'm sad I never got to "meet" her. What an amazing woman she was. And what an amazing woman you are as well. You inspire me to do everything I can to be the best I can be in spite of my illnesses. I too have some kind of spondyloarthritis (as well as possibly Crohn's, but they can't find it through scopes... I have symptoms and serums that are indicative though). I also have Sjogren's and I'm now being tested for dysautonomia. Right now the doctor is calling my arthritis zero-negative RA because there is no damage in my SI or hip joints (but there is a considerably amount of daily, ongoing pain in those areas). I can completely relate to you comment about the pain being so widespread that you can't even sort out where it's coming from. And for me it varies in nature too... one place spasms, one place a stabbing/burning pain, another a deep intense, nauseating ache... all going on at the same time. I think that's one reason why it took me so long to get a diagnosis. I couldn't articulate the pain, it was so intense, varied, and widespread. That and I "don't look sick". In fact I "look" healthier than most women my age. And at times I would look in the mirror and wonder how I could feel so horrendous inside and still look as well as I did. I have to admit after all these years of chronic pain and fatigue it takes a lot more effort to now look "well".

    Thank you for posting your story here. It sounds a great deal like mine, except that to my knowledge no one else in my family has ever had AS. My grandmother had "arthritis", her mother and one of my grandmother's sisters, both had "arthritis" in their spines and based on pictures I believe one of my grandmother's brothers had arthritis in his spine as well. My great-grandmother and her son were quite stooped by the time they reached middle age (my grandmother and her sister however were not). Yet I'm not HLA-B27 positive so I'm not sure if they had AS with out the known gene or if they had some other form of spinal arthritis. They were elderly in the 1940's and lived out in the country, no doctor gave them an official diagnosis of "arthritis", there is no record just word of mouth history handed down from one generation to the next.

    Seven years ago my odd pains, mild fatigue and "sleeping wrong" pains went haywire. I woke up one morning and my right hip, knee and ankle hurt so badly I could barely walk. After that day things went downhill pretty quickly. It's taken me 7 yrs of unrelenting pursuit to be taken seriously and get a diagnosis, and now treatment. At this point I'm not all that concerned what they label the condition, I am just grateful beyond words to finally be getting treatment and some semblance of relief from this unrelenting, debilitating pain and fatigue. After 7 years it was truly starting to weigh on me in a number of ways.

    I so appreciate your posts. Thank you for being an inspiration.


  4. Thank you so much for reading and sharing your story, Christie!

    I'm so sorry for how well you can relate to mine.

    It's good to walk together.

  5. I hope so. You sure are, Rachel.

  6. Powerful post, perfect photo. Dazzling that you could spell ankylosing spondylitis in grade school! Interesting and sad to read the progress of your disease. I felt terrible for years there about how much pain you were living with on a daily basis, and I remember being surprised that you found the stiffness so disconcerting when the pain was "normal" for you. I'm thankful that AS is not usually a fatal disease because you are such a treasured friend and I need you, but I really hope the new doctor is able to make a significant difference to reduce the effects of your disease. I worry about your future, and I worry about your now, so thank you so much for doing that! Seeing doctors is bravery as well. I discovered in high school how gratitude makes the difference in pain and fatigue, but it's been a long haul and I need the reminder. Thank you for using your words and reminding us of that, and often. Love you!!!

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