A.S. Face 0539: Heather

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

8 Responses to “A.S. Face 0539: Heather”

  1. Thank you for telling your story. It is so strange how similar if not “Exact” in symptoms are illness is from person to person yet, the doctors cannot Dx this quickly. It can be quite frustrating.
    I LOVE your photo! That must have taken a lot of strength and courage to climb.
    You will climb this as well…

  2. Heather: Nice to hear from you, and welcome to the group! You will find a great many people having similar issues to you, and within your age group, too! All of us wonder what the future will bring with our own particular A.S. diagnoses from time to time, but I see that you are not letting it lead you. I admire your courage and determination, which, no doubt you inherited from your father. Best wishes to you! Stephania/Face #445

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

  4. Hi Heather,”Not sure what tomorrow holds” I really like that.It’s so true.I guess none of our futures are written in stone.Wish you the best future.

  5. Hi, I know what you mean about the frustration of knowing more than most doctors and lack of knowledge! I had early symptoms age 14 and was not diagnosed until age 28! Also that epode think you are just a hypochondriac or weak just because it is not a visible illness. Yet it is serious to be prescribed drugs like methotrexate, which is mild chemo! thanks for sharing! Oh and just curious, is your sinusitis connected to the A.S?

    • I honestly am not sure if the sinusitis is connected to the AS. I have had allergies my whole life, but it seems like the last couple of years that they have gotten really bad. I have lost my hearing on and off the last couple of years and had tinnitus that lasts for weeks at a time. It seems that I got sinusitis about the same time I started experiencing more pain in my neck, shoulders, and upper back from the AS. Since sinusitis is inflammation of the sinuses I wonder if it is possible that the AS is contributing factor.

  6. Heather,

    It’s nice to meet you and like all of us you are frustrated and worried about the future. Your positive attitude is the key to keep pushing for answers and treatment. Keep fighting and I will share something that I just read.

    Like you, I have low Vitamin D, I read a research report a couple of weeks ago that discussed the relationship of AS’ers and how the respond to treatment when they have low Vitamin D. Basically what hey found is those patients with low Vitamin D did not respond to treatment as well as those with normal levels.

    So I am making sure that I keep my Vitamin D up. I am taking 5000 units a day and its still on the low side of normal. There is still much to be learned and there is still on long way to go on the research but I will try anything I can to help make myself ( and others) better.

    Jim Williams

  7. Thanks for posting 🙂 I’m from Chicago too!!! Northwestern is the best in our region, good luck with your treatment. Your story is similar to mine. Im 40 and been diagnosed for 7 years, chronic iritis/uveitis as well. Wishing you all the best. Maybe we can meet one day! I have looked for support groups in our area, with no luck 😦 considering such a large community. Oh and I love your picture in the mountains!! Stay strong!!

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