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Pam’s Story (Ankylosing Spondylitis)

Pam Ankylosing Spondylitis HHey there. My name is Pam and I am 40, yeah, older than dirt as my little girl says. It seems I have had a lot on my plate lately and would love to say I am winning the battle. My head is still above water, but it’s getting harder to stay afloat.

It all started when I was about 18. I was then diagnosed with psoriatic arthritis and thyroid disease. I was having episodes where I could barely walk and the pain was getting very hard to bare. I managed to put myself through college and during my last week of student teaching my husband walked off and left me for another woman. So after my Mom shaking some sense into me and talking me out of giving up, I held on to the side of the building as I walked and would go to the bathroom every few minutes and wipe the tears and finished my student teaching.

I finally got my dream job of teaching those with special needs. I knew God’s plan in my life was finally taking shape. I met the true love of my life, had a beautiful baby girl at age 33, built my dream home, THEN boom! My world fell apart. It seemed that having a baby flared up my disease to the point that I couldn’t function. My parents had to move next door to help me with daily chores and my baby. My dreams had turned into a nightmare. The pain was so bad that all I did was cry.

So for the next 3 years I was pretty much a shut-in in my home. During this time I was at my lowest and finally just said God you have to do something. Somehow He did. I had seen probably over 200 drs at this point. They now called IT ankylosing spondylitis and told me that my spine and neck were fusing. My thyroid was out of control too no matter how my meds were changed and my long, thick hair was all falling out. Somehow I managed to go back to work and fake it. But after 3 years I had my job taken from me (LONG story). The stress of that sent my body into a spiral of pain that would not let up.

So since Dec of last year I have been home. Every day is a struggle. I am still losing my hair, my pain is out of control, drs are of no help. I began seeing a fundamental type practicioner, changed my diet, taking supplements, etc. but nothing is changing. I feel lost here all alone by myself day after day but I do have God and boy do I wear His ears out. I know there’s a plan and some how this will all have to come to an equilibrium.

I am a fighter – not a quitter. The mirrors make me cry but then I get angry and want me back even more. I know I am not alone and want to reach out to others. I feel God has big plans for me. I just have to get unstuck. Love and prayers to all.

Pam
Kentucky
Submitted 2-16-11

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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15 comments

  1. Dear Pam, Thank you so much for sharing your story! You certainly have been through a lot.
    You’re correct in that you are not alone. There is a large and loving online community of people with spondylitis doing what you are – sharing their stories and connecting with others.

    Wishing you all the best! May you find treatment that works better for you!!
    Let me know if we can help.

    Elin
    SAA

  2. I love your fight like a girl logo!! Our stories are similar – sort of, maybe. I was diagnosed in 1985 or so. I started having problems my senior year in high school. My eyes were the first to flare up in high school. The doctor’s were baffled but when they took x-rays of my hips a year or so later they quickly put two and two together and came up with the AS diagnoses. I’ve never realized how blessed I am to have been diagnosed early on until I hear the stories of others. No doctor has ever told me in was in my mind, like so many other folks are told.

    Anyway, thanks for sharing. I hope the blogging and such help with your recovery process. Note I used the word “recovery” as in – it WILL get better. I don’t know how or when but it has to, right?

  3. Pam: Remember that you are not alone with your pain; there are many virtual communities with whom you can share your story. They will understand your pain, your loneliness, your struggles. Keep up the good fight; you have incredible strength of will and spirit.

  4. Hi Pam, I admire your spunk. Sometimes it’s like trying to run in quicksand. I’m also in KY and still work part time as RN. I’m 46 years old and not feeling too bad about it. Not TOO bad…. ;-)) I would love to hear from you; we have several things in common!

    ~Sheila

  5. Pam – Thank you for sharing your story! It broke my heart, and yet, it inspired me.

    I, too, understand the battle to continue on, day by day, and yet, know in the very core of me that God IS in the midst of all of this.

    I know that He has a plan for you. Perhaps you took the first step of that plan by sharing your story here. 🙂

    There are two things I hang on too when the day is so overwhelming I want to throw in the towel.

    One: Phil 3:14 (my paraphrase) I can do all things because God CONTINUALLY pours HIS strength into me.

    Two: In those dark moments, I just keep repeatedly reminding myself that ‘there are new mercies in the morning.”

    Somehow, that gives me the determination to hang on one more day.

    I don’t normally do this, but if you would like to get in touch and just talk, you can find me @ bygracenotmerit@gmail.com

    Sending you my love and my prayers.

  6. Hi Pam
    I ADMIRE YOUR COURAGE!!
    I too am 40 and have AS. My neck has fused already. I have been battling this disease for 8 years now.
    It hit me so hard and fast I thought for sure I was going to die. My mom was my inspiration to never give up and plow on thru. I have lived thru days of extreme pain. Days where I couldn’t walk, get out of bed and all I wanted to do was cry (and did) from the pain.
    The meds made my hair fall out and start greying early. I stopped taking the meds last yeat and my body seemed to mellow out. I still hurt. Right now my hip is killing me. But with OTC pain meds and rest I am getting by reasonably. I guess it is amazing with what we learn to live with.
    I know I have to find a treatment that will work for me but the biologics scare the poop right out of me (the risks associated with it). I just had a tumor the size of a football taken out in January and in my mind I think the Prednisone was the cause of that. Ah trade on beast for another right?
    Thank god I have boss that understands. Well at least I think he does LOL. I mean it is hard to hide what I have. I do not even let myself think about what others think when they see me. If I did that I would need a whole lot Valium LOL Anyhow to keep along story short; Your words inspire me.
    I will not go down for the count. I am going to fight on too.

  7. Hi Pam, “I feel your pain” im guessing you have tried everything, however i thought i would mention following just in case.

    1.Essiac tea (detox)
    2. Boswellia (Ant-inflammatory)
    3. Fish Oil (Kirkland brand) (Anti-inflammatory)
    4. Rose Hips (studies now show this dose help)
    5. Prayer

    Peace and Love, Prayers to all.

    • Just found a medical treatment that works for me, and I have been crippled for years with AS. I no longer use TNF blockers or opiates. Look into LDN (Low Dose Naltrexone) therapy. In conjunction with supplements, diet and thyroid support, I have shed my cane and my brace… miracles are coming. Hang in!

  8. hi thank you for sharing your story. I also have AS and a few other autos. god does have a plan i can no longer work and i am a work aholic i was so fustrated i felt useless. today i have a ebay store and sell rhinestone pet collars i love working with animals and this job in away has given that back to me. i believe this is gods plan.i know he has a plan for all of us you are doing so much by sharing your story i think that is a huge purpose i too am in so much pain that some days i wishe i could just stay in bed but this little business and these chat rooms and others stories like yours help me get up every day and persevere.thank you and best wishes

  9. Claire Louise Morley

    Hi!
    I was reading your blog and a lot of what you were saying rang a few bells with me. I have had many health issues, but at the moment I am experiencing immense joint pain – even my knuckles and jaw – mostly in my lower spine, hips, knees, ankles and wrists. Been tested for osteo and rheumatoid and come back negative but inflamation shown in blood tests, At present, been told it’s fibromyalgia, but was wondering if it could be AS. Not a hypochondriac – my uncle, his son, my paternal grandfather and his mother all got AS. My dad and my brother were tested but as they were negative, I never was. Is it genetically possible for me to have AS if my dad was negative? I know that the genes we receive are a mishmash of our parents genetics, so is it possible that the gene was in there somewhere? I would just like to eliminate the possibility if that is not the case as I was told I couldn’t get it because I was a girl, which is why they didn’t test me. I would be grateful if you could give me any info. Thank you! x

    • Claire Louise Morley:
      I think you should get an HLA-B27 test done. I don’t know anyone in my family to be tested and no one I know has AS but we’ve had rheumatic fever alot in our family- I had it when I was 12 and just recently (23yrs) I was diagnosed with AS. what i am saying this is because I had the same chronic backpain, one knee swelled up and jaws pain and neck stiff .
      wish you all the best. I hope you dont have AS.

      Pam: Your story brought tears to my eyes, but also terrified me. I just recently got diagnosed with AS and reading such stories is making me so sad and worried about my future. Allah have mercy on you dear. Surely He knows the warmth of every tear shed in the nightly hours.

      • Wow, Have suffered from AS since ’97. Lucky 4 me i found remicade in 2004. It still works 4 me nearly 8 years later. Tonight has been all about linking AS(seeing it’s an auto immune disease}, thyroid problems and depression problems together. Hope u going ok Pam, love your spirit

  10. Hi,
    I’m a mom looking for whatever will help my daughter with her pain. She is HLA B27 pos, but no lesions on the bones. One thing she has found that helps is Doan’s back pills. Anyone else found this to be true? What have you all found OTC or herbal that helps.
    Thanks Mom

    • I only felt normal once for three weeks. I went back into my old medical tests and found an IGg panel on @ 200 foods. I popped on almost every food… Even celery. They rate your reactions by how strongly the test came back. I ate turkey chili for three weeks. It was the first and only time I knew why people ran for fun. Unfortunately my new found energy backfired and I injured my leg in a bouncy house. Lol. Long story. The IGg test worked for me when nothing else had. The IgE test ( anaphylactic allergy) didn’t show a thing.

      Pain meds don’t work for me. I had rib pain for two years and I finally have some relief by taking 50mg of amitriptylene.

  11. I’m having a very bad flare and thought for sure the steroid infusion would do a little something besides make me crazy but I was wrong this time. I am scheduled for Remicade in three days but wow…the pain has become somewhat debilitating. I googled and your story came up and I feel better just knowing there are others just as frustrated and spend some of there time crying. I sure hope this is just a flare and nothing permanent. Starting to get hard to hold my head up and look down at phone…IPAD..computer. Oh and the spasms….wow..even the heavy duty meds don’t work. Sorry to complain . Thank you for sharing your story.

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