A.S. Face 2120: Annie P.

Face 2120

My Journey with AS started when I was 12 years old i was walking and my hip gave out. I knew something was wrong but didn’t know what or care at 12 years old. At 19 i was pregnant with my first child. My hips again would give out, i would be in so much pain that I couldn’t walk the ER gave me an XRay and a pain shot and sent me on my way. At 24 i had my second child. The severe back pain began. I would cry my self to sleep every night but try not to cry because it hurt to cry. Every breathe in that my lungs took felt like someone had there hand in my spine and was squeezing it. Flar ups like this would come and go. I was grateful for the relief but still no answers as to why. At 27 i was referred to a Rheumatologist. She said i found an xray of you at 18 with spinal fusion. I didn’t know anything about anything. She started me on some medications for inflammation and she would give me injections in my hips. I just new i went and seen her and she made me feel better. She took a job and moved away. In 2012 I was in a flar the pain was so bad that i could hold my son(3rd child). They did an MRI this is when they found the bone marrow edema(swelling). I finally belonged somewhere they put me in a category. I am Hbl27 NEG. But I have radiographic changes and was diagnosed. Wow this beast on me finally has a name. But I still felt alone. The heating pad and pain pills became my best friend. I would try to tell my friends, my family no one could really understand. My husband is always supportive and takes on both roles of the parents when I cant. I have learned a little more about the disease but get discouraged because im reading destructiveness, pain, suffering , worsening and sometimes agony and this is how i feel. So its hard to learn about something so horrific. Its like a bipolar swing when im not in a flare I feel fixed and when the pain returns it like a slap in the face a dose of reality that i really do have this disease they call AS. Im now 37 and it has traveled to all my other Joints. So when my spine isn’t flared up everything else is. Most days are painful some are pain free the first part of the day. I sometimes get moving in the morning and feel completely normal then by 2 im so fatigue I have to cancel plans ive made for the evening. I tell people im not feeling good cause thats easier than explaining all over again whats wrong with me. So with me feeling all the pain and all the fears that hold me captive from getting the help I need. I facebook. I found this sight. But im Scared to take any tnf, biogenics what if i get more sick what if i catch the C word. These are the thoughts. So over the last week or so ive built up courage to get my blood work and make that appointment and get honest. I need help im scared, and I am a face of AS. I hope for support here and that the doctors can help with a new plan. I have only met 1 person with AS and she moved away.

Illinois, United States of America

3 Responses to “A.S. Face 2120: Annie P.”

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

  2. First
    You are not alone.
    So many of us have done this

    Second. Try the biologics. Humira doesn’t much help my elbows and knees. But it made the Fatigue (no one who hasn’t had it can understand) go away. It just went away

    Love x

  3. Please do not worry. Do regular exercises. I am doing since last 23 years and is perfectly fine. Driving myself and doing all household chores myself. Professionally excelling.
    All the best. Be positive.

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