A.S. Face 0548: Michelle Daly

My name is Michelle Daly and I was diagnosed with Ankylosing Spondylitis in my mid 30’s, I am now 42.  At the age of 2 1/2 I experienced a prolapsed rectum and after surgery to correct this it was found that my body was not healing itself.  My mom made many trips to the emergency room with me and unexplained fevers in the following months after surgery.  It was finally discovered that I had Crohns Disease at such a young age.  As a result I had parts of my intestines removed that resulted in a colostomy.  I have had this colostomy for close to 40 years now and endured around 37 surgeries in my lifetime thus far.  I started having low back pain that began in my early 20’s, a few years after giving birth to my first child that wasn’t really serious enough to look into at the time.  I began to experience even more low back pain in my late 20’s after the birth of my second child and just attributed it to the pregnancy and weight gain.  At that same time I experienced my first bout with iritis in both eyes that resulted in doing steroid drops and oral steroids at the same time!  That first episode was by far my worst and almost resulted in loss of vision in one eye.  I began to experience iritis frequently for the next 6 years or so and doctors’ told me it was tied into the Crohns.  I again began experiencing low back pain so bad in my early 30’s (after the birth of my 3rd child) that at times I could barely walk!  I started with pain management doctors at that time (no AS diagnosis yet) that started me on Darvocet, which in the “very beginning” did help but my body eventually became immune to it and it lost it’s power to control my pain but was definitely better than nothing.  I was then referred to a rheumatologist and after x-rays and MRI’s the diagnosis of Ankylosing Spondylitis came in!  That was around 2005/2006.  Not long after that diagnosis Darvocet was pulled off the market and because I was extremely hesitant in following the doctor’s advice and trying the biologics (like Humira/Enbrel) he said the next best thing to try would be Tramadol….which is not much more help than just taking Ibuprofen to be honest.  I am still taking it because I’m afraid not to….to have the pain I have had at my worst times scares me to death!!!  I just this year (June 2012) had more x-rays done and I am starting to show signs of fusing in my spine, nothing is fused yet but heading in that direction.  My rheumatologist has finally laid it out to me that my only real option is the biologics if I want to live a somewhat decent life and be active for my kids.  Even after hearing him put it this way I am still reluctant to go that route!  I am terrified of the side effects and don’t like the idea of chemicals in my body!  When I was given the first Rx of Darvocet, I filled it and it sat on my counter for weeks before I took the first pill….I don’t like drugs, period!!  After he told me this and with my desperation level on the rise, I started looking into natural ways to handle this and decided to give acupuncture a try.  I am happy to report that at this time it really is helping.  I’m not gonna lie and say I’m totally 100% pain free but it has diminished enough to get me back into exercising and now starting yoga.  I do a lot of praying to the only One who can truly help me and have faith that He will!!!  I know that acupuncture won’t cure my disease but neither will the biologics and I am not knocking anyone who takes that route (I have heard great results) but it’s just not for me at this time.  Thank you for exposing Ankylosing Spondylitis for what it really is…..a truly debilitating disease and not all in our heads!!!!  God Bless to all of us who suffer with it…..keep the faith and do what feels right for you individually!!!!  I plan to fight this disease as “naturally” as I can and as long as I can…..so help me God!!

Florida United States of America

9 Responses to “A.S. Face 0548: Michelle Daly”

  1. Wow welcome and hi

  2. WOW and welcome

  3. Hi Michelle,
    Thank you for your story. I too feel like I have to fight this naturally. I am allergic to aspirin, Tylenol, ibuprofen and many other drugs with anaphylactic-type reactions. They tried me on vioxx but had a severe reaction to it also. Am afraid like you to try either methotrexate or the biologics. Thanks for sharing about the acupuncture. I have wanted to try this also. Now I will more than likely add this into my natural therapies after hearing your story.

    Would like to share what I recently learned called a low-salicylate diet. I don’t know if you have an aspirin allergy, but salicylates are in a lot of foods. They can help people with arthritis, but if you have an aspirin sensitivity exposure to more salicylates in the food you eat just increases the inflammation in your body. I did a water fast for a day and a half and instantly started to feel better. My IBS backed off, the headaches, the fibromyalgia symptoms. I believe the salicylates were causing problems for me as most of those types of foods I crave and I had been eating a lot of them in the last 6 months and had been noticing my AS was a lot worse. The book I am reading is called Fed Up by Sue Dengate and her website is http://www.thenewsonfood.com or google low salicylate, low chemical, low amine diet. They have done a lot of research on this in Australia and the UK. (Also salicylates are in a lot of products like soap, shampoo, lotions and is very readily absorbed through the skin, so decreasing your exposure this way has also added to the decrease in pain that I have been feeling. All that exposure adds up, topically and through ingestion).

    Keep praying and being the strong person you are! We with AS are fighters, we have to be!

  4. Welcome to our diverse group Michelle. Each is unique, but we share similar lives. If Biologics holds potential for you there is no need to fear. Humira is a good place to start. It’s easy and you are in control of the schedule. There are some reactions to watch out for, but to a high degree are not serious. Scleritis drove me to biologics, but I wish I had started it decades sooner as it completely resolved my IBS. Wishing you the best.

  5. Dear Michelle,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  6. Welcome–Please feel free to connect with me with questions or to vent anytime. Thanks for sharing your story.

  7. Thanks so much for writing your story. I too am fighting tooth and nail not to take biologics. Was taking NSAID until May but have been eating a totally no-starch diet and swimming most mornings for an hour. Honestly, the NSAIDs got me to the point where the pain eased up enough to allow me to swim. Now seems as the diet and exercise are keeping the pain at bay or I am in remission not sure which. Was finally diagnosed in February after a long haul of misdiagnosis. New to the thought of having this disease and am glad that you feel the way I do about the meds. Good luck to you and thanks for sharing your story.

  8. welcome, michelle! i’m so sorry to hear what you have gone through…at least you have a positive attitude and a place to come where we will all listen and give feedback and support!
    i had been on the biologics for three years, and i was getting so sick all the time that i finally decided (after runs with both enbrel and humira stopped working and my dr wanted me to start on simponi) that i’m just going to try life without them for awhile. i will say that they seemed like miracle drugs in terms of my joints, but the side effects can be much more difficult to work with. the tiniest sniffle can turn into pneumonia faster than you can say “spondylitis” ; ) so i understnd your concern, and there are so many natural ways to keep our bodies strong through eastern medicine, like acupuncture, and of course, diet and exercise.
    best of luck to you as you figure it out the best you can. that’s all we can do…day by day. xx

  9. I can definitely relate to you. Though I had undiagnosed Crohns all of my life and it wasn’t discovered I had AS and Crohns until after my third daughter was born (I was 31) and the pain from both were out of control. I too was terrified of biologics but in absolute desperation and seeing my Dad who is already fused from AS knew I personally needed to take them. My Dad said if he had the choice he would do it in a heartbeat and I prayed about it. I’ve now been on them for 6 years. I’ve had surgeries and no problems with them whatsoever. They are not perfect and I do suffer still but I no longer struggle to walk. I also have complete peace about taking them. I think we all eventually have to find our own peace about our treatments. Accepting that we are not the ones in control of our lives is not always easy to do. I believe one day God will deliver us from these painful diseases.

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