Jen

I am a sister, daughter, cat mommy, and tenured professor at a well-known state university.  My world was turned upside down in July 2008 when I was diagnosed with AS.  Previous to the diagnosis, I had several bouts of iritis over the previous 6 years along with episodes of severe joint pain that would resolve in a few weeks.  Fortunately, because of the history of iritis and joint pain, family history of AS, and the presence of HLA-B27, I was diagnosed very quickly and immediately started on an aggressive course of treatment.

Since my diagnosis, the pain and stiffness in my back, neck, and peripheral joints is almost always present.  I receive 400 mg of Remicade every four weeks (about 8 mg/kg) and am currently trying to taper off of prednisone.  I am at 4 mgs and counting but don’t expect to ever be complete off of it.  I am lucky that I don’t get the worst side effects of long-term steroid usage; but I do have thin skin, glucose sensitivity, and acne-like bumps on my face.  In Fall 2010 I contracted a nasty case of mono and am only now feeling close to 100%.  In Spring 2011, after nearly a year of intense nausea, vomiting, stomach pain, and regular “Hiroshima events” (severe abdominal cramping episodes that result in a complete purging of my guts), I was finally diagnosed with severe gastroparesis.  My first GI wanted to do surgery. I found another who was willing to try medication to manage the symptoms.  I responded well to Domperidone but couldn’t deal with the lactation side effect.  I am now on daily antibiotic therapy with good success.  I eat a bland, gluten-free, mostly fat free diet, with small portions and no solid food after 6 pm.  I still have nausea and stomach discomfort, but it is manageable without medication.  While there’s not clear connection between AS and gastroparesis, I notice an uptick in my symptoms in the final week of my infusion cycle.  I have begun to wonder if the GP is actually a manifestation of sub-clinical Crohns, in part because my sister has very similar issues with her GI system.

Despite aggressive treatment, my AS seems to be progressing.  X-rays in 2008 showed no fusion and I’m not sure what the situation is now.  My biggest issue, apart from episodes of severe pain, is fatigue.  My job is very demanding and, when classes are in session, intense.  I have finally come to understand that I need to build in time to relax and take it easy during the week as well as on weekends.  Before this, I was someone with very high levels of energy.  Even now, few people realize I am dealing with a chronic health condition.  But I have finally started to accept that I am never going to be my “old” self again and that I need to get my employer and others to work with me to help me maximize my contributions.  This involves some easy things, like assigning me afternoon classes (I had to explain what mornings are like for someone with inflammatory arthritis!); and some more difficult things, like cutting back on service assignments.

It’s been a tough 3.5 years since my diagnosis, and I’ve had to make a lot of adjustments to my life.  It has taken me a long time to accept that my life has changed, but to see that those changes are necessarily bad.  There are things I can no longer do, things I once took for granted.  The unpredictability of AS is tough on relationships.  But it has made me more empathetic to others.  I live my life with more purpose, with more focus on the present.  I am grateful for the things I can do.

Austin, Texas United States of America


2 Responses to “Jen”

  1. Dear Jen,

    Thank you for sharing your story with us. Yesterday my doctor asked me how I was adjusting to my life in the regards to not doing the same things I have always done.. I said the way I deal with it is… when I was little I road a tricycle, then a small bike with training wheels, then no wheels, a ten speed, horses, motorbikes, cars, life is still the same as always… simply changing…
    grateful for what I have done and what I am still able to do.
    Sincerely Cookie

  2. Thank you for sharing Jen. I feel your pain and your spirit!. I too have AS, Gerds and Gastroparesis. 2 hip replacements and surgery on both feet. I have just switched to Simpori, one shot per month and I am having great results and the shot is basically painless. Much different from the Embrel. I’m out walking again and enjoying my grandchildren and loving life for what it has to offer at this stage of the game. I keep telling myself it could always be worse and be thankful for the blessings God has given me in the mist of the storm. God bless you.

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