A.S. Face 0445: Stephania Ford

My name is Stephania Ford, from Michigan, United States, and I am a face of A.S.  I have been reading many of the posted stories of the faces of A.S., and there have been so many similarities to my own story.  My journey began years ago when I had debilitating back pain where I could hardly walk for days (back in the late 70s and early 80s, bed rest and pain meds were prescribed).  I was always worried about when the next time my back would ‘go out’.  I went to doctors of orthopaedic, chiropractors, and family physicians.  No one could ever put a name to my agonizing, unrelenting back problems.  I went along for a number of years on narcotic pain relievers, which were helpful, but I still had a great deal of pain most of the time.

People would ask me why I walked so funny, and why I could not straighten up when I got up from sitting.   My family doctor told me that I had degenerative disc disorder, so I hung onto that theory.  In  2009, I was diagnosed with breast cancer.   I received chemo and radiation treatments, and my bones starting screaming in pain.  It was as if every bone in my body was alive with pain.  I would sit shivering from fever under a blanket and rocking myself trying to will myself out of pain.

I went to my family physician for a pain assessment visit in 2011 (which are required for his patients who are on narcotic pain medicine), and he asked me to do things like touch my toes, turn my head to the left and right, look up at the ceiling, swivel to the right and left, etc.  He commented on how stiff I was–I couldn’t turn my head very far each way; I could not touch my toes; and I had about 10 degrees of flexion when looking up to the ceiling.  He said, “Why are you so stiff?”  Next, my doctor checked my hips and when he put pressure on either side, I screamed in pain.  He said that he thought I had Ankylosing Spondylitis.  He prescribed Mobic, and immediately set me up with an appointment with a rheumatologist.  For the first two weeks I was on Mobic, I thought it was a miracle drug.  It immediately helped with the inflammation I had, which helped with the pain as well.  It felt good to be able to walk again!  After two weeks, unfortunately, my pain came back.

I went to see my rheumatologist, who ran tests and diagnosed me with A.S., as well as started me out with a steroid shot and Methotrexate, which helped immensely, albeit only for a short while.  My rheumatologist has been increasing my dosage of Methotrexate to help with the increasing inflammation that I have.  My family doctor has been increasing my pain medication dosage. I have sought help from a pain clinic by getting nerve blocks and trans-femoral epidurals.  I worry about the future, as I still have 10 more years to work before retirement, and my pain as of late has been almost unbearable, especially when walking.  I can sleep about five hours, and then my back just aches!  I force myself to walk my dogs for about 1.25 miles every evening because I like to stay active, and my dogs like the walk as well.  There are some nights when I am just in too much pain and my back is spasming, and I have not been able to walk without being hunched over.  I have resorted to taking a walker with me at times when my husband and I walk the dogs. Another major obstacle I experience is fatigue. It is difficult to shake this feeling of being extremely tired all the time.  I worry about the rest of my body systems every time I have a pain or unusual feeling.   I am anxious to try something like Remicade or Enbrel, but I don’t believe my insurance will cover the cost of them just yet.

I have a wonderful husband who accepts me for who I am; however, I feel badly that I am often too tired or in too much pain to do things with him.  I am hopeful that I will be able to work out my last 10 years relatively pain free, and then enjoy my retirement without all the fatigue and pain that goes along with A.S.

My name is Stephania Ford, and I am a face of A.S.

Michigan United States of America


12 Responses to “A.S. Face 0445: Stephania Ford”

  1. Thanks for sharing your story Stephania. I hope you find some relief soon so you can enjoy your retirement. I had 2 infusions of Remicade so far but it hasn’t relieved any of my pain. I’m praying it starts to work soon. Wishing you the best. -Laura

    • Thank you for your support, Laura. Sorry to hear about the Remicade not working yet for you. This disease is very tricky, and seems to be so different in its presentation for everyone. I go from days where I have not been able to walk at all for a few hours to being able to take an actual walk with my dogs. It is very frustrating to say the least–I just don’t know what is next! (Who does?). But it is certainly a BIG comfort to know I am not alone–so glad I happened upon this website! Thanks again, Laura, you are in my prayers!

      Stephania

  2. There is help for Enbrel….I have insurance but it doesn’t pay for it all. Now I pay only $10 a month. This program is well know in the AS community.
    Gayle

    • Gayle: Thanks for the info! I will see if I can find more on this program.

      Stephania

  3. Dear Stephania,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  4. Thanks for joining us Stephania. From what you’ve told us, I have a feeling your Rhuemy is about ready to put you one of the biologicals(Enbrel, Humira). My experience was the insurance pretty much required the Rhuemy, and it was part of Rhuemy protocol, to try all the conservative “cheap stuff” before moving up to the others. My Rhuemy kept “dialing” up the metho also-and then finally said take this Enbrel and get out of my office (well, not really). If the meds you’re taking now don’t work, then tell your Rhuemy.

    PS-I managed to say Rhuemy five times. It’s the kind of word you just LIKE to say.

    • Derek: Thank you for your welcome. I will ask my Rheumy about the other anti-TNFs such as Enbril. She did say I had to go through Methotrexate first. I don’t know what the ceiling is for it, though. I appreciate all the good comments, welcomes, and advice I have been getting. So happy to have found this website! It really helps to hear from others who have the same illness. Now we can all care and share!

      Stephania
      P.S. I like the word ‘rheumy’, too!!!

    • Derek: My rheumy is checking to see if I can go on an anti-TNF like Humira, Enbrel, Remicade; however, she is checking with my oncologist first. I hope that I can. I did get a prednisone shot, and I have been feeling pretty well for the past 5 days. Yesterday was a VERY good day, in fact. Do you know of anyone who has not been able to go on the biologics (anti-TNFs) due to a history of cancer? Thanks, Stephania #445

  5. Stay strong Stephania!

  6. Stephania, you were the first to welcome me to the AS family. Thank you for the kind words. Also, I wanted to tell you the drug companies have programs that help with the cost of biologics like remicaid and enbrel. Just ask your Rhuematologist. I’m taking Remicaid right now it really helps, but no remission yet. That’s my goal… Remission … Doesn’t that sound fantastic!!!
    Blessings,
    Nadean AS face # 510

  7. Hey Stephanie,
    It’s been a long time since we have talked. I’m just checking in to see how you are. I’m having a rough change of season. Been. Little down lately. Still on Remicaid infusions. Hope you are doing well.
    My email address is nadean2148@gmail.com feel free to email me if your willing to re- connect.
    Blessings to you and your family.

  8. Hi Stephania, thanks for sharing your story. I’m sorry for everything you have been through. I understand only too well the fear of how many more years of work we have to do. Hopefully better treatments and understanding will come our way soon.
    Peace and painless days.
    Lorraine

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