A.S. Face 0253: Mandy

I think Ankylosing Spondylitis should be called “The Sleepless Disease” because I miss sleeping so much. I miss laying in a bed and sleeping for 8 hours. I feel depressed when I hear someone say “I’m going to sleep in, in the morning”…knowing I haven’t been able to sleep more than four hours at a time in the past 5 or 6 years. Maybe it should be called “The recliner disease” seems most nights I can’t even lay in a bed because the pain and stiffness is so severe. I guess my last idea for AS to have a new name is “The Suffering Disease” seems that’s what life with this disease is, endless suffering. Hi. My name is Mandy and I have Ankylosing Spondylitis. I remember having episodes of back pain and severe tailbone pain even as a young child but in my mid twenties things became more than bothersome. When I was pregnant with my second daughter at the age of 25 I was diagnosed with siatica after having many episodes of struggling to walk, putting pressure on my legs became excrutiating. It seemed my pain would last for a week or two then go away for a week or two only to return again. After I gave birth to my daughter Autumn, the pain didn’t go away like the doctors thought it would it just continued and became more frequent and more severe. By the time I was pregnant with my third daughter at age 30 I was more than a mess. I was in tears trying to walk and put pressure on my legs, my tailbone hurt so much when I would try to stand up that I would have to grit my teeth to keep myself from screaming. My pain continued after having my daughter Kara, and after many epidsodes that were now lasting almost a month now of worrying how I would walk my oldest daughter to the bus stop because I could barely walk and crying struggling to walk to our bathroom I knew something was very wrong. Thinking back…. I grew up watching my Dad in pain, so much pain in his back I would see tears in his eyes. I knew he never slept because he was always hurting and his chair became his bed because he couldn’t lay down anymore. After years of being misdiagnosed, suffering and his spine completely fusing my Dad was diagnosed with something called Ankylosing Spondylitis. I remember being glad he finally had an answer to all of his pain and his spine frozen in a bent over position. I also remember being heartbroken for him knowing it would never get better and that he could never stand straight again. One thing that stands out most in my memory though is my Dad telling us he was thankful that the doctor told him that only males could carry this disease and how he was so relieved to know that none of his three daughters would suffer like he had…..So as you can see I never related his pain to my pain and how I was headed down the very same painful path. After going to my family doctor and getting no answers from xrays I decided to try a chiropractor. I went to the chiropractor for a week, told him how I couldn’t sleep anymore, how walking was a struggle…how depressed I was. He tried to adjust my back and I screamed at the top of my lungs in pain and cried…..my chiropractor knew something wasn’t right. I remember him handing me tissues to wipe the tears from my cheeks and looking at me so concerned and then even though I still had not put two and two together told him about my Dad. I only knew the first part of the name “anky……” is all I could tell him, he filled in the rest. He then told me how females could get that disease too and I remember it felt like my heart fell into my stomach. …at that moment I had my answer, I knew I also had Ankylosing Spondylitis. I remember going home crying and my husband David hugging me, we were all too familiar with this disease and were both scared. I was sent first for the HLA_B27 gene test, which of course came back positive. My chiropractor called me and told me the news and told me he was sorry and that I shouldn’t come back because he couldn’t treat this disease, that I needed a rheumatologist.  After being sent to the rheumatologist and having the MRI which confirmed the inflammation in my spine and around my tailbone I began treatments and the rest is history. I’m 36 now and I was diagnosed at age 32. Even being on biologic medication I still struggle everyday. I’ve learned it doesn’t matter how long ago you were diagnosed, this disease consumes your life. I am not angry or bitter about having it but I do get depressed. I have days where I feel like I don’t know how I’m going to live with this the rest of my life without going crazy. I have days I feel sorry for myself and I have days thinking “why me?” Most days are focusing on doing my best to live the most normal happy life I can. I’m thankful to God for a loving and very supportive husband and three beautiful daughters. I want to show my girls that this life is not perfect and we all have struggles and it’s up to us how we react to it. I also know that it’s ok to cry, to be sad and know that this disease is so overwhelming alot of days. I have fears about my future, will my spine curve over and freeze, will I ever have go without medication and how could I bear it…..though I have so many fears and struggles with AS I see the big picture of life and know I have a God who loves me and will carry me through..

Middletown Ohio United States of America


5 Responses to “A.S. Face 0253: Mandy”

  1. Dear Mandy,
    Thank you for sharing your story with us. I hope more than anything what comes out of the “Faces” project is that the misconception about it being a mans disease is put to rest. I hope one day we find a cure. I hope one day you will share your father’s story. Thank you so much.
    Sincerely Cookie

  2. Thank you Mandy.
    Loved the name you gave AS – “The recliner disease”. So many miserable nights spent on recliners with several pillows for support.

    Take care.

  3. Hello Mandy,
    The “recliner disease”… that perfectly describes AS to a T. Nights… I live on a La-Z-Boy recliner as I find a bed initiates progressively worse muscle spasms. I stuff a pillow behind my head with a rolled up towel at neck level. I sit on pillows with another pillow under my legs. Even with 8mg Dilaudid, the pain is excruciating. Flexeril, a muscle relaxer, really helps a bunch. AS is working on my jaw, neck & ribcage currently. I went to my DDS; both he & my GP told me I had TMJ with my right ball joint socket allowing my jaw to dislocate, pop out & jam up. I finally got some rest after being up for 3 days w/o sleep; if it weren’t for Flexeril, I’d probably still be staring at the walls all night, totally exhausted. Avoid complicating your life, prioritize & give yourself a break. Stress is a monster that activates AS; the more stress… the faster the degeneration. Best wishes & GOD Bless!

    John

  4. Hi Mandy,

    Thank you for sharing your story. I, too, inherited this lovely disease from my father. I’m not angry or bitter that I have it, in fact, it’s kind of a blessing that this is something that both my dad and I “share.” It brought us closer, and at least we have each other to understand our aches and pains – and now, this site. We know we are not alone. We will all help each other through this terrible, dibiltating disease!

    Sending hugs to you.

    Laura

  5. Hi Mandy, Thanks for sharing and welcome. I understand the sleeplessness, I sleep 40-60 minutes, wake up for a whiile, back to sleep 40-60 minutes, all night long. sigh. Try not to let the worry consume you, I don’t have insurance, thus no meds (except naproxen which our son does get through insurance) so one can survive w/out any meds. I’ve found doing any type of exercise (just walking a little each day) will stave off the fusing. Hang in there. I’m 50 now (diagnosed at 22, symptoms b/4 that) We can have this disease w/out it having us. hugs, Elizabeth face 40

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: