A.S. Face 0137: Tiffany Stearns

I was diagnosed with Ankylosing Spondylitis when I was 27, but with the amount of fusion I have they believe I have been suffering from AS since the age of 11. In my mid twenties, I realized something was seriously wrong. The list of things I could no longer do seemed to be growing continuously. I had even moved a chair into the bathroom to sit on because I would get fatigued brushing my teeth. I started sitting down on the floor, but my fellow AS brothers and sisters, you will know that only added to the growing list. It wasn’t easy getting off the floor without help. The constant fatigue was overwhelming. Normal things like holding something in my hand was painful. I was in my twenties, but I felt like my body was deteriorating. Little did I know at the time I had a constant enemy. My own immune system.

The year of 2011 has been the most difficult year so far. This last March I became sick with bronchitis. I went to the doctor on a Monday for an antibiotic. By that Friday I told my husband I felt like I was dying, little did I know I actually was. He took me to the doctor, and only a couple hours later I was admitted into the hospital. My AS had caused my kidneys to shut down completely. The first couple of days were the scariest days of my life. I put on a brave face, but at night I wasn’t so brave. I knew my AS had taken everything away from me. I knew very well I would no longer grow old with my husband, I would never be capable of starting a family, and I would have a new constant priority in my life…a dialysis machine. I sat in the hospital fearful I would never find a kidney, because a transplant would be necessary. I prayed more than I have prayed my entire life, and to the doctor’s amazement my kidneys started to respond to steroids and fluid. They came back, but I will always be fearful it could happen again.

Most people have never heard of our disease. I know that sometimes I feel so incredibly lonely. I can’t explain the pain and why it jumps from one area to the next. Some days I sit alone  hooked up to a tens machine just wishing for the ability to escape from my body for just an hour. I would like to be able to do things without forcing myself to endure being uncomfortable…things that people would never understand, like gripping a steering wheel or tying my shoes. Basic everyday tasks like taking a shower and getting dressed are a challenge. The constant fatigue coupled with the inability to sleep because of pain is frustrating. Some days are better than others, and thank goodness for those days. The good ones give me the strength to get through the bad ones. I am a wife, a friend, a daughter, a sister, but I am also the face of Ankylosing Spondylitis. It may not be a well known disease, but this does not make it any easier to endure. Ankylosing Spondylitis “survivors”, we understand our fight and we feel a mutual comradery. We are a family. I am thankful for all your stories. Thank you for letting me share mine.

That is my story Cookie. Thank you so much for putting a group together where we can unite!

Tiffany Stearns

Lawrenceville Georgia United States of America

5 Responses to “A.S. Face 0137: Tiffany Stearns”

  1. Dear Tiffany,
    Thank you so much for sharing your story with us. Thank you for understanding the reason that I do this, the countless hours invested, the tears of understanding and the devastation of knowing I can’t help everyone, but give them a place to be heard, a place of comradery and a home for our family. It is my great honor and blessing to do this Tiffany.
    Sincerely Cookie

  2. Tiffany – your story was fun to read – I do not get how the pain jumps around from one part to another – the wierdest thing. I try to “listen/understand” my body and at the same time I spend as much energy trying to ignore and get away from it. LOL I love reading these stories, Cookie is really doing so much for all of us 🙂 Hang in there – (I love the picture)

    • What I meant when I said the pain jumps around is like a few days ago my elbow was inflamed, and today I am having difficulty with my knee. I am always in constant pain with my back and neck, but other areas vary. I will feel like I injured myself, and that area aches with a constant burning sensation from the inflamation. Fingers, knees, elbows, ribs, ankles, etc…It is unexplainable and unpredictable. I hear you Valerie on the attempting to ignore, but we all know that is next to impossible! Thank you for the feedback! I should have explained it better initially : ). I was looking for your number. I would love to read your story.

  3. Tiffany~ I can certainly relate to the issue of fatigue. Aside from the pain, this is by far one of the more disabling symptoms of AS for me. I have my ritual for keeping up my energy, but I’ve also accepted that are simply times when my body needs to rest, even when my mind would like to keep going. The since of loneliness is something I think we can all relate to, in many cases being the only one living with AS in our circles. As much as people we know and love empathize with our pain, they can not know what we’re experiencing. Cookie through TFOAS has provided us with a wonderful opportunity to get to know others who are living with AS via their stories, as well as show support for one another.

  4. I wanted to give an update. The end of last year I ended up getting really sick. I thought I had a severe sinus infection because my nose was bleeding a lot and I felt flu-like. December 6th I told my husband I needed to go to the hospital, and he took me straight away. My blood pressure had dropped so low I was unable to walk. Very long story short, one month later I was discharged from the hospital with a 19 inch scar and a brand new liver. My AS had attacked my kidneys in 2011, and when my team of doctors sent my liver to the Mayo Clinic once again the only obvious cause was my AS. My liver was extremely large. It had been regenerating every time it was inflamed which made it continuously grow. I am extremely fortunate. People have to wait years for new organs, but on Christmas Day I was told my new liver was in route and though I was scared I was extremely grateful. I went into the hospital thinking I would get some saline and an antibiotic, never did I imagine I was so close to dying. I am doing very well. My new liver is doing great. I thought my kidneys failing was the hardest thing I have ever endured, but this has been the biggest challenge thus far. I know that people read this website for support, so I wanted to make an update in case anyone out there was battling the same challenges.

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