A.S. Face 0362: Ashley Penner

My name is Ashley, 39, a mother of 3, a wife and a sufferer of AS. I was diagnosed May 2011 by my General Practitioner. I was having severe hip pain, sitting, standing, lying down, nothing would give me reprieve. Finally I went to the doctor, we reviewed my medical history; knee pain since high school, the feeling of always being “out of shape”, weak ankles, painful shoulders when I exerted my arms, the headaches from the back and neck pain, abdominal pain….and so on. I was questioning RA, Lupus, or Fibromyalgia. I know people with all of these, some of the symptoms are similar. I asked her to please test for it, she was slightly reluctant. After blood tests, 24 x-rays, abdominal ultrasound, colonoscopy and repeat blood tests, we finally discovered that I was HLA-B27 positive and had some damage in my right hip joint. When I went in for the results it was a very strange visit; she went to get her medical books, told me I had AS and started reading from her medical book. What???? English please? She apologized, she had no answers for me and kept offering her condolences. The next words from her mouth rocked my world….”Go home and Google it! That’s the best way for you to learn about it until you can get to a Rheumatologist. I have never diagnosed this and simply don’t have enough knowledge to educate you.” Bless her heart, I started to feel bad for her because she felt so bad that she couldn’t educate me on the life sentence she had just handed down.

Since then, I went to the Rheumatologist and we finally figured out the right combination of meds. Humira twice a month and Colcrys daily (anti-gout med). Colcrys (colchicine) affects the way the body responds to uric acid crystals, which reduces swelling and pain, it helps with my peripheral joint pain. I was feeling almost good as new towards the end of the year, but when the New Year hit, so did my deductible, it reset and guess what? I can’t afford my Humira, even with the “Humira Card”. I haven’t explored other options as of yet, I ‘ve been waiting to see what happens, it hasn’t been too bad until recently, can’t sleep, back hurts, hips hurt to the touch, ankles hurting and swelling again….time to go back to the Rheumatologist for help.

Any advice or knowledge that you can share with me I appreciate. I am still relatively new to AS and am still discovering things about it. Ironically enough, my step-brother (no blood relation), 42,  has it too! He was diagnosed in his early 20’s. I remember when my now 16 year old was 9 months old, he couldn’t even bend over and pick him up, I had to hand my son to him. Today, the shell of him is still here, but he for the most part he is gone. He’s on oxygen 24/7, walks like an old man, hunched over, pain pills that keep him in the clouds, medicinal marijuana, steroids, and sleeps all the time. It’s like he’s 90 years old, frail, weak, unable to carry out a conversation…. of course I see him and my greatest fears come to life….is this my future?? God, please NO! Am I passing this gene to my kids? I don’t know how early we can test for it or if they even will without symptoms. At least we would know if symptoms should show themselves in their mysterious ways. I wouldn’t want them to go undiagnosed for years in pain.

Thank you for listening! God Bless you all!

God, help me to trust that You will guide me through the pain, many tears and the confusion that comes with chronic illness. When I have questions, remind me to stop and pray, knowing You will bring me on a path where I will not stumble. Amen.

California United States of America

5 Responses to “A.S. Face 0362: Ashley Penner”

  1. Dear Ashley,
    Thank you so much for sharing your story with us. Thank you for sharing from your heart. Remember from this day forward you are never alone.
    Sincerely Cookie

  2. Oh my. I am on Simponi, they have a “Simponi One” drug card. Without it, I don’t know what I would do. Maybe look I to that with your
    Rhumetologist ?

    My love and healing!

  3. Hi Ashley
    Web search Dr. Alan Ebringer, he has did research on (AS) and found that starch causes problems with (AS). I would recommend to get the book- The IBS Low-Starch Diet by Carol Sinclair. Carol Sinclair was a patient of Dr Ebringer and has (AS), she worked with help and put this book together for people with (AS). The book will explain the disease, the cause of the disease and why the No-Starch diet is so important to be on. I have been on the diet for alomost 6 years now along with supplements and it has made my life with (AS) much better to the point that I am not taking any meds and I am almost in remission. feel free to contact me about my health routine if you would like to know more.
    God is in control in every part of our life’s.
    Eric Baker

  4. Thank you everyone for your reply. Do any of you find that cold/heat makes a difference for you?

    Jacquie – When I start seeing a new Rheumatologist (we are moving beginning of June), I will definitely ask. Hopefully our new insurance once we move isn’t crazy outrageous.

    Eric – I will definitely look into that book and Dr. I LOVE STARCHY FOODS!! I will be soooo sad!

  5. Ashley,
    I just want to thank you for sharing your story with me. I’ve learned about a disease that I didn’t even know existed. It just touches my very soul when I think that people live in pain and as we look at them daily we have no idea.

    I looked at some of the other ‘faces’ and some of the storeies, I was really touched and uncontrolled tears fell. We just don’t know the journey of our fellow brothers and sisters and to know there are so many people that struggle to even move their bodies, just touched me in a way that is really hard to explain. The courage that I hear in the stories is amazing.

    From this day forward, I will remember to pray for all of you burdened with this disease.

    God Bless,

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