A.S. Face 0841: Mery

Face 841841

My name is Mery and my affair with Arthritis began in 1996  when I was 16, I was a junior in High school and one day my hips started hurting so bad I screamed in school and I literally could not move. I remember biting my lip as I walked home that day from school. The pain was unbearable and I was terrified because I didn’t know where it was coming from since I wasn’t very active I knew it wasn’t due to a sports injury. My pain lasted several weeks and all doctors could say was that I had growing pains.  One day I woke up and found that my knee was swollen so much so I couldn’t bend it and when I reached the doctors they told me I had gout. The doctor took liquid out of my knee and sent me home but my pain came back this time on my hips and feet. I went to see my first rheumy  after that and I have been on pills since then.

I was told by my doctor that I was lucky that I was diagnosed with arthritis at such a young age because I get to plan out the rest of my life accordingly. I stared at him and a tear fell down my cheek, I thought to myself “how do u possibly plan your life knowing you will be in excruciating pain every day”. I was on sulfasalazine, prednisone, tolmetin, vioxx  and methotrexate at one point and I tried everything on the market at that time. Of course nothing took away my pain, and I was too young to tolerate the emotional pain that my body was going through so I fell into a horrible depression. On my senior year It took all the strength I could find just to walk with my class at graduation  because that day I was in terrible pain and to simply walk was a task in itself.

I refused to go to college because I had to use a cane to walk and I felt ashamed when my school mates saw me. Nobody knew exactly what  was wrong with me and my peers just made up rumors which hurt even more. I didn’t know what was wrong with me  and I felt confused, my doctors knew I had arthritis but had not pinned what kind yet.  I stayed home and was not very active so my pain got worst and I fell deeper into depression. I tried to find refuge in dating but I failed because the minute men saw me limp they looked the other way and nobody in their right mind would choose a woman who was damaged goods. I eventually found a man who didn’t turn away and he is now my husband, I wish I could say that I found refuge in him but I didn’t.

I had been treated for my pain and symptoms but not my disease and it wasn’t until 1998 that a different doctor looked at my chart and said let’s test you for HLAB-27. The day I was told I had Ankylosing Spondylitis was the worst day of my life because I finally knew what my monsters name was and I could finally put a face to my pain. In my mind I went through all the stages of grieving. I was grieving for the life I could never have, I was pissed and asked why me? everyday! I started on enbrel and I saw a huge difference but my pain never went away. I finally felt strong enough to try and have a family and the more people told me not to the more I wanted a baby.

I got preggers and went off Enbrel but stayed on vioxx. I thank God everyday that my girl was born healthy because I took vioxx during the first trimester, my pain was just too much to bear and I could not live on Tylenol alone. During all my pain and pregnancy my husband wasn’t supportive, the man I though was going to stand next to me and fight my fight was no where to be found and I knew it was me against the world. My family was there for me sometimes and other times they simply were too busy with their own troubles. I delivered my daughter and was able to breastfeed for 1 year on Tylenol alone! I fell back into depression once again and tried to kill myself but was not very good at it 😉 yeah! I can laugh now right but then I was cutting away at my wrist!  My friends and family were not aware of how bad  pain was and I don’t know if I was good at hiding it or they just didn’t care. I felt so alone and could not face the pain all by myself, back then I didn’t know anyone my age who was in so much pain and I felt truly alone.

I stayed in my marriage and after 2 more children and 12 years of marriage my husband  does not go to my doctors appointments and it wasn’t until this past year that I made him face what my disease was because he never once bothered to look it up on his own. It takes unselfish people to stop and care for others and their pain and it is hard to meet anybody who will look past their own busy life and ask how I am. I hardly have friends and my family is still very absent in my journey with Ankylosing Spondylitis. I am tired of crying by myself and feeling alone, sometimes it’s not the physical pain that causes the most damage but the emotional pain.  I am now on Humira and Tylenol and after having had arthritis for 17 years I also suffer from Ibs, internal hemorrhoids, a hiatal hernia, bladder spams, glutten sensitivity and fatigue. I am no longer alone, I have 3 beautiful children for whom I wake up and I do it happily even if the pain is excruciating!  I know that someone out there will be reading this and saying that they too cry by themselves as I do. You must know that you are not the only one who fights this fight alone!

Thank You,

Mery

California, United States of America

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14 Responses to “A.S. Face 0841: Mery”

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

  2. Hi Mery,

    Oh what a story, I have had a similar journey to you, except I wasn’t diagnosed with anything early, I was disbelieved, but I’m writing my story on a blog, and my post on depression may be of interest to you http://battlingankylosingspondylitis.wordpress.com/2013/05/07/having-as-is-depressing-thats-just-a-fact-but-we-dont-have-to-accept-this-we-can-find-things-which-help-us-cope-and-make-us-feel-better/

    Best wishes

    Jane 709

  3. Hi Mery,
    Thankyou for opening up about your journey with AS. Even tho you have in the past gone through some very tough times and still have tough days of pain, isn’t it wonderful that you have beautiful children who you love and care for – I’m sure they feel the same for you. My AS isn’t as bad as yours and I was diagnosed late in age, I understand the feelings of grief that you went through. I am on antidepressants, which for me have been my godsend, because I couldn’t accept emotionally that I have this condition. It’s been just over a year since diagnosed, and I’m just starting to accept a future with AS. Some time in the near future I will come off the antidepressants , continue with daily exercises, pain meds, meditation etc and keep looking for the positives in my life. I have a wonderful husband and children and that alone gets me through each day. At least I am not alone in this – there are a lot of AS friends out there. Best wishes.

    • Hi Sigrud,
      I’m glad antidepressants worked for you, unfortunately sometimes excepting our path can take a lifetime but you are not alone! I wish you the best.

  4. Mery,

    Change the name and a couple of places and you have me. You are so not alone. It’s an amazing journey and no, you are never really alone. You have some new friends who have a clue what each day brings. Come here and be with friends who are like you, a great person inside and out.

    Scott

    • Wow Scott I think that’s why we get each other so well, at the end of the day we all go through the same path just at different stages in our life.
      Thanks for reminding me i’m not alone!

  5. Dear sweet Mery…. I am a California native as well. I can totally relate to not having the family support. I have no problem talking with you at any time. I am a single Mom of four young men as they are now getting older. Being that you are in California, you can call, text or email anytime of any hour of the day. Sleep? I wish I knew what it really ment…. Keep fighting hun, you now have othets to help support you and listen to anything you have to say….. 408 469 3918… rosealie73@yahoo.com contact me anytime. I will keep you in prayer as I do all my brothers and sisters of AS… God bless you andyour family!!

    • You made me cry Rosealie ! It’s beautiful to know that there are people out there like you, I will get in touch for sure and hopefully I can provide you with the same support you are willing to give me!

  6. Oops Rosealie 770 :))

  7. I am sorry you have had it so bad with AS. But you are not alone, you don’t cry alone. Those of us with AS are here for you and cry with you. I know it can be a lonely condition that nobody understands but there are those of us that know and understand. This group and ASAP are a good start. Anytime you need to vent you can respond back or just go to the ASAP Facebook page. It’s a great group of folks that seem to be willing to help.

  8. I know EXACTLY how you feel. I got it when I was sixteen as well. Fortunately though, my father had the same thing when he was younger and told me pretty soon after I was in a constant state of pain that he was sure it was ankylosing spondylitis.
    I actually had a terrible “flare-up” today and had people looking at me as if i was a soul to be pitied and almost got sent home because my manager was embarrassed by my limping…it was horrible.
    They really need to find a cure for this monstrosity already. I need a normal life back!

  9. Wow.. Just at a lose for words. Doesn’t happen often with me. I’m usually a smart ass but your story blew me away. Xxx

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