My name is Heather and I have Ankylosing Spondylitis (AS).  I was officially diagnosed with AS when I was 23.  I first started experiencing pain in my sacroiliac (SI) joints around the age of 18.  I noticed that I couldn’t get up off of hard flat surface when lying down without stiffness and shooting pain in my left SI joint.

To diagnose the pain I went and saw a rheumatologist at the local military base.  Note: My healthcare was provided by the military because my father is 100% disabled and retired from military.  The doctor took x-rays and was not able to find anything on the x-rays, but said based on what I was experiencing that I probably had arthritis.  I didn’t receive specific diagnosis to what type of arthritis I had, nor any medication for treatment.

The next couple of years I just dealt with the pain.  It was not constant and was typically brought on after standing on my feet for long period of time.  This became problematic for me because I was an assistant manager of a large movie theater.  The shifts became grueling, because I would be on my feet for between 5-10 hours.  There were days that I experienced such pain in my SI joints that I could barely walk to my car in the parking lot and would be in tears.

Over this same time period I was attending college three or so hours from home. I started to notice that on the weekend drives home sometimes I couldn’t turn my head to see my blind spots in the car.  My neck was stiff and I experienced pain up and down my neck and shoulder.

After college when I had my own health insurance I went to see another rheumatologist for treatment of my arthritis.  I was put on oral steroids and again not told what type of arthritis I had.  I am not sure if the steroids ever worked for me.  I didn’t like side effects of them, so eventually stopped taking them.  After another year or so I decided to find another rheumatologist.

I started seeing Dr. Eric Ruderman at Northwestern Memorial Faculty Foundation in Chicago.  I finally received a diagnosis of AS when I was 23, five years after I saw my first rheumatologist for pain.  The arthritis in my SI joints was now visible on my x-rays.  My doctor told me I was lucky, because it can take 10 years to be accurately diagnosed.

Fast forward to now.  How has my life changed since I have been diagnosed…..I realize that I cannot have a job where I stand all the time.  I am also coming to realize that stress and lack of sleep causes my arthritis flare up.  I have also been diagnosed with iritis, uveitis, dry eye syndrome, asthma, hypoglycemia, chronic rhinitis/sinusitis, IBS, low vitamin D, low iron, and plantar fasciitis.  I have about 8 doctors that I see on a regular basis.  I have more health issues then someone my age should have and some people think my illnesses are in my head, because you cannot see my illnesses on the outside.

I know more about AS then most doctors out there and realize there is so much research that is still required about this autoimmune disease.  I try not to take a lot of medications, however my dosage and number of meds keeps increasing.  I am currently taking 7 prescription medications plus 3 dietary supplements on a daily basis.  I find that I get some of the best relief from pilates and yoga.  I currently take voltaren for my arthritis and omeprazole because the voltaren messes with my stomach.  I now also have to have my liver and kidney functions monitored regularly because of long-term usage of the drug.  In the course of my treatment I have also tried acupuncture and cortisone shots (shoulder and SI joints) to get relief from pain.  The progression of my arthritis has been as follows:  SI joints, neck, shoulders, feet, and upper back

I worry about what tomorrow might hold:

  • Will I be able to get health insurance?  AS is considered a preexisting condition and those of us with AS are not eligible for healthcare in the private insurance market; therefore until the healthcare law is enacted (praying it is not repealed) I need a job with benefits or get married to someone that has a job with benefits.
  • Will I be able to find a job that is accommodating when I have flare ups and that offers flexibility for me to go to doctor appointments?
  • How long will I be able to keep working?
  • How much would my AS affect me if pregnant or post-pregnancy?
  • What will the quality of my life be in another 10, 20, or 30 years?

Overall I try to keep a positive outlook and enjoy life in the now, while keeping healthy.  I take time to travel extensively internationally and domestically while I can still physically maneuver relatively easily.  I am not sure what tomorrow will hold for me, but I will do my best to endure.  I think I draw my strength from growing up with a father that is 100% disabled and lost a limb.  If he has endured, I know that I can.  I hope the telling of my story will help other people dealing with AS or educate those wanting to learn more about the disease.

Chicago Illinois United States of America

One Response to “Heather”

  1. Dear Heather,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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