A.S. Face 0347: Traci Leiner

My name is Traci. I’m from California and I was diagnosed with Ankylosing Spondylitis in April of 2011. It’s hard to believe that just last year I was unable to walk from my bed to the bathroom by myself. My pain started when I was 23 years old and trying to get in the best shape of my life for my wedding. I had always been an active person. One of my favorite things to do was hike- the more challenging the better. Both my husband and I worked for 24hr fitness and worked out 5-6 times a week. I thought I was at the height of living a healthy lifestyle when I started to feel pain in my low back/glute area. At first, I thought I had pulled a muscle in the gym and fully expected it to go away. Little did I know that 4 years and 2 pregnancies later I’d be completely disabled. I must have seen over 10 doctors and had countless tests and procedures done to find out what was wrong. I’d go from specialist to specialist; when one couldn’t find anything wrong they’d pass me on to the next poor soul to try to figure it out. I always felt like the doctors would look at me when I walked in and immediately not take what I was telling them seriously. It was so discouraging because I’m the kind of person who procrastinates going to the doctor for as long as I can. I desperately needed help, but they would just give me cortisone injections and send me on my way. The only problem was that the pain would always come back and it was getting worse and worse. Feeling alone and frustrated, I started dealing with the pain and limping my way through life. The injections were no longer working and I wasn’t interested in taking pain medications. I didn’t want to mask the problem, I wanted treatment for the problem. And despite what my doctors were telling me, I refused to take pain meds while pregnant with either one of my girls. I have no idea how I got through my second pregnancy. By that time, walking down the street to our local farmers market wasn’t even an option. When I did attempt to go outside it would take all my strength and energy to get one leg in front of the other.  I would have to stop multiple times to gain my composure and not cry in public. My husband would come home and find me stuck on the couch where I had been sitting for hours crying from pain and humiliation. Or he’d find me on the ground because I had tried to crawl to the nearest phone to call for help but couldn’t make it. All of the things I had loved to do before were gone.
Through all of this I tried to keep a positive outlook. I’d joke about my limp and not being able to get in the bathtub by myself. I always believed I would feel better the next day and was even a little intrigued when one doctor suggested getting a Tens Unit. “I get to walk around town getting a butt massage all day and no one will ever know!” I joked with my mom. It wasn’t until thousands of dollars later, all treatments failing, multiple trips to the ER, and the realization that I couldn’t be the mom that I wanted to be that my spirit broke. I started to hate seeing other people casually walk by me or overhear someone talking about their fantastic tennis game earlier that day. It was all I could do to not glare at the person next to me complaining about having to go to the gym later. I was becoming a person I didn’t want to be. I was bitter.
When my second daughter was 5 months old I decided enough was enough. I was going to seek treatment and live my life the way I wanted to. Pain free! I was going to be as annoying and relentless as I had to be to get better. By this time, all the specialists had informed me that I didn’t have a problem they could help me with. To manage the pain I was sent to a pain management clinic. There I saw multiple doctors, once again, and was eventually diagnosed with Piriformis Syndrome. This was the wrong diagnosis and the pain continued. Out of pure frustration my doctor decided to do every test possible to figure this out once and for all. We hadn’t done an MRI, X-ray, or bone scan since I had been pregnant for most of the time. I’ll never forget the day that I was told I had Ankylosing Spondylitis. The pain management doctor came in and showed me my MRI and explained the significant uptake in my hips. She didn’t know what she was dealing with and had to consult with another doctor at first. I remember feeling relieved and angry all at once. Finally there was proof that something was in fact wrong. I was angry that it took so long to diagnose and that the doctors had not taken me seriously up until this point. I was sent to a Rheumatologist for further care and receive X-ray guided injections into my SI joints every 6 months.
I am thrilled to say that I am almost pain free and back to leading an active lifestyle. I never take for granted the pure joy of being able to walk down the street or get down on the ground and play with my girls. Until it’s taken away, you don’t realize how wonderful and precious that gift is. I look forward to gaining more knowledge about this disease and embracing it as a part of who I am. Never again will I let it take hold and dominate me the way it did before. I may be an AS sufferer my whole life, but I am many other things first and foremost and it will not break the person that I am today……. or the person that I will be in 100 years. This is just another challenge to overcome. Been there. Done that. Bring it!
Oregon United States of America

8 Responses to “A.S. Face 0347: Traci Leiner”

  1. Hiya, Thanks for sharing your story, I also have A/S & can completely understand what youve been through, its so frustrating. Great too hear your almost pain free.

  2. Great Story Traci ! AS Face 0339

  3. And now I’m bitter at you for being pain free and living an active lifestyle (I can’t believe I just said that-my old girl friend used to call that “blurting”). Of course I don’t mean that-but your story Traci forces me to confront my bitterness. This whole blog forces us all to confont our bitterness. WE don’t want to live like that anymore.

    • Ha! Love your honesty, Derek 🙂 Pain alters a persons personality in surprising ways. Bitterness feeds the disease I think. It’s a symptom that can’t be helped at times. Who wouldn’t be bitter going through what we go through every day? But once you stop focusing on how pissed you are, the more you can focus on improving yourself. What needs to happen for you to be pain free and how can you achieve that? You definitely need a good team of doctors behind you…. That’s for sure 🙂 Wishing the best for you!

  4. Dear Traci,
    Thank you so much for sharing your story with us. I am so happy you are at a place that you are almost pain free, thank you for showing people there is always hope!
    Sincerely Cookie

  5. Dear Traci,

    Please let me know the injections name which you used for your A.S . I am also having A.S with so so so bad pain i also want to reduse my pain , kindly let me know the manufacture company name i am from Pakistan their is not any treatment for A.S.

    • Asim- I haven’t forgotten about you. I had the injections last week but my dr was running 2 hours late so I never was able o speak to her. The techs that assisted in giving the inj weren’t sure who the manufacturer is. She is supposed to call me 🙂

  6. Asim- I am so sorry that you are having pain. I am not sure what the injections are specifically called. When I asked my Doctor she said it was a cortisone cocktail. A mixture of things. I am going in for more in 2 weeks. I will have her tell me what they are called and get back to you. Until then, I hope you are able to find some relief.

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