A.S. Face 0295: Jen Yates

I didn’t know it at the time but I have had Ankylosing Spondylitis since I was 20.  I was holding my 3 week old daughter & walking & dropped to my knees when a sharp pain shot down my hip/leg.  I went to the dr only to be told he thought it was a pinched sciatic nerve.  A few yrs later I had a problem with my upper back near my shoulder-blade.  I just woke up one day with horrible pain that my dr couldn’t explain except to say I was having muscle spasms.  He gave me muscle relaxers which I could not take at the time having a young child and having been a single mom having to work.  I just kept working through the pain.  A year later I was driving and was checking my mirrors and then turned my neck to check and make sure no one was behind me to get over in the next lane of traffic.  When I turned it back all the sudden I couldn’t move it anymore.  That was the scariest feeling & the last time I would be able to turn my neck for 3 months.  I had to go on  leave from work.  I was put through all kinds of tests to see what was wrong with me.  I had an MRI done.  I had Cervical Myositis in my neck.  (degeneration of cartilage in my top 4 metatarsals).  I was told I could no longer work at a desk or I would have to have my neck fused within a year.  I lost my job. During all of this I kept having more pain in my hips like a dull ache on and off.  I thought it was because I had gained weight with my daughter and lost it and gained some back and lost it again and so on.  Also the Shooting pain down my leg always came and went.  Sometimes I would have to drag my leg around for a few days because I couldn’t put much pressure on it would cause so much pain.  I saw a chiropractor and that did help sometimes but I still have fears of my neck being messed with and we really can’t afford it now with my not working and all.  I have Interstitial Cystitis (Painful Bladder Syndrome) which when it hit me in 9/08 for the first time and I felt like a spiked bowling ball was inside me it was also accompanied by sacrum pain and groin pain.  I had a cat scan with and without contrast nothing showed up, colonoscopy still nothing, kidney ultrasound nothing, regular pap caused immense pain I felt like I was in labor and screamed for them to hurry.  With that they ordered a vaginal ultrasound inside and out and found nothing. (later was when they found out that part was from my painful bladder syndrome and the sacrum part of my back from the AS causing all of the pain).  After this I had to have a Laparoscopy 1/09 because they had not found out anything yet those results were found 6 months and 2 years later. My dr thought I had Endometriosis and had no proof so put me on  Lupron- Depo (Menopause shots) that was the only way to see if I did have it or not she said.  This was the worst mistake I ever made.  I still have problems from these shots.  I went off the shots after 5 months and switched dr’s. My new dr found the Interstitial Cystitis.  He also is the dr that referred me to my Rheumatologist that has found my Ankylosing Spondylitis dx 11/2010.  She has also dx me with Fibromyalgia.  I had to have an entire body bone scan for my AS to be found.  It did not show up in my blood work.  After looking through all of my doctors files my Rheumy told me she believes I have had AS since I was at least 20.  I have a lot of pain every day.  Some days I have to crawl out of bed and cannot walk very well until my medication kicks in.  But I would rather live with AS knowing what it is than not and still searching without an answer…..

Tis not the apple of my i when I awake I realize I was dreaming No longer can I run with the breeze of summer as I sit up I notice the cracking as I straighten my back I remember I am more like an icicle in the winter fragile like glass In my dreams I swam all day in the afternoon sun Real life reminds me of how I have no energy though the day has just begun My limbs ache as if they are not mine,  had they been borrowed from an older time? I know I have to accept this body there are no exchanges in life Though each new day brings yet another struggle To be continued says I…..

Jen Yates

Roseville, Michigan United States of America

5 Responses to “A.S. Face 0295: Jen Yates”

  1. Jen, these stories make me tearful because I know the pain you are in and, although it is good to know we are not alone, feel sad that others have to suffer as we do. I have found some ways to ease the pain and fatigue, some healthy, others not, but every day I feel emotionally stronger. I have had AS for 20 years now and somehow pick myself up every day. I love the sunshine because those are my best hours, so I moved to Texas and find the weather uplifts my spirit. I have heard cutting out starchy food can help so that is what I will try next. Take care, Richard

  2. Hi Jen!
    I can relate. Mine began around the age of 20 also. I dropped to the ground (actually my daughter landed on the bed next to me) when my leg just gave out carrying her when she was little. I had to drag my leg for a while. (i call it the Egor walk). It’s weird how you can read everyones story and find pieces in each one that are similar to something you’ve been through. Thanks for sharing your story. You’re not alone.
    ((face 199)

  3. Dear Jen,
    Thank you so much for sharing your story with us. There is so much that I can relate to, but like you I would rather “know” I have A.S. then to live with the pain and not know the cause. Thank you so much.
    Sincerely Cookie

  4. If the HLA-B27 gene is a requiriement to get AS (I know cookie, I don’t trust you “non-HLA’ers”), then the “creativity gene” must also be a requirement.
    I love your poem Jen. There’s something about AS that brings out the best in people-don’t you think? I’m starting to feel sorry for those “non-AS’ers”!

  5. It’s amazing how much this is like me! Thanks for sharing your story. Know your not alone. ((Hugs))

    Carla (face 297)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: