A.S. Face 0413: Ashley

413 413a 413b

 

My name is Ashley, and i’m a 29 year old  from Connecticut.

First and foremost,  I am a mommy to my three incredible little boys, Nico (6) Jake (27 months) and Brodie (10 months), second a wife to my husband Paul, and third, I am an AS kind of girl.

I will fight tooth and nail before I let AS creep up so much that I say “hi, i’m Ashley, I first have AS”. I was diagnosed with this fabulous, chronically disabling yet invisible autoimmune disease which we’ve all come to know as Ankylosing Spondylitis “AS” in November 2008.

I also have been silently suffering from another auto-immune disease Chrohn’s/Colitis since a about 1997, and also carry the defective chromosome HLA B27.  I’ve tried all the common meds for AS, and my next step is methotrexate/enbrel combo, plus pain meds. I try not to define myself, nor the life I live by this disease, but oh how hard that has become.

How is it that you don’t surrender yourself to this crippling, degenerative, disease that ruins every inch of your body? Truth be told, i’m finding it hard to kick it. I could not even describe how I feel, because i’ve actually forgotten what is was like to feel well, thus having nothing to gauge it to.  Frankly, I don’t even remember what it was like to be the person that I was before, so hyper and energetic, athletic, and full of life.

How hard is it to be judged by people who have no idea why you are in pain, why you’re supposedly so sick, yet appear to be fine.  I never wanted nor want people to see me as a complainer, so much so that I rarely tell people about this disease in which I suffer every minute of my life.  I do so because AS is invisible, has so many tiers, so many things that it does to our body that many people just don’t get it.

If you sat there and complained about all your pains, some don’t even sound like they could even possibly be related to the next, thus you’re a hypercondriac.  If only if it were just our back/spine that hurt.  Sometimes i’d just like one person to live in my shoes for one day.  Sometimes i’d like that person to be my husband so that I could know for sure he understands me.

I’d like someone to get up in the morning from a horrible restless tossing/turning painful night sleep feeling so stiff from your neck to your toes that you literally roll off the bed, place your unbending feet on the floor, waddle to the bathroom like a god damn penguin, to take your pain med (or if it’s a really bad night you know to set your alarm for about two hours before you actually need to get up to take it), creep down the stairs (of course not holding the baby because that would be a death sentence multiplied by two), push through the next few hours until your body is what, 20% less stiff? Press through the day as you pick up toys off the floor thinking about how your hips feel like they are going to break in half, how your low back is excruciating, and how the rest of your body hurts right down to your jaw, and sometimes you cannot even open a jar of applejuice, so one of your children gets a juicebox instead.

You go throughout you’re entire day feeling like you have the flu, but a hundred times worse.  You’re so fatigued (yes another symptom) that you just think to yourself that is it even possible to live like this?  Your heart hurts, and not just because you’re heartbroken over the fact that this life which is now yours will never be like it was before, you will always be in pain, you will always feel like you’re 100 years old, instead of however old you are, but literally, since this disease can actually even cause heart failure.  Frankly, when people say “oh you have three boys and are sick, how do you do it?”  I say first, that they are a blessing.  If they were not here I don’t know where i’d be, but most likely i’d be laying in my bed, not thinking about tomorrow.  Second, the exercise I get taking care of them, is the exercise that keeps me from fusing!

So I guess we all have a choice, either let this disease completely take over our life, or try to deal with it the best we can.  As for me, I try to not show my pain, and hurt, but sometimes it shows in other ways, whether it be being short with my husband or just outright being in a bad mood, but i’d like to say those days are far and few in between, and give myself a little pat on the back for not completely giving up.

Well, it’s nice to meet everyone, I look forward to meeting many new people!

Be well 🙂

Connecticut, United States of America


20 Responses to “A.S. Face 0413: Ashley”

  1. Ashley… I can so totally relate to every word that you wrote. While some folks can empathize to some degree, the only way they could totally grasp how pervasive this disease impacts every aspect of your life, would be to walk in your shoes for 24 hours. The fatigue to do just the “simplest” things can create an impossible challenge. It’s as if we’ve repressed memories of our former selves; it’s hard to imagine a time that we had our health & our entire lives ahead of us. It’s not easy being the eternal optimist, but I figure at this point, my fate is in GOD’s hands, as it always has been. What choice do we have but to play the hand that we’re dealt? Public & professional awareness is essential… hardly anyone seems to “get it” & when they do, it’s like some kind of epiphany. Raising a family makes for a pretty full plate. Pace yourself & make sure that you take good care of number one… YOU! I try to keep it uncomplicated, but that’s easier said than done. I hope that you can find the inner strength to keep up the fight. GOD Bless you & yours. I pray that you can find inner peace & relief from the pain & stress.

    Warmest regards,

    John

    • Thank you so much john for your kind words. ive come to meet so many new people and its nice to know we can all support one another. Keep in touch, be well yourself, and thank you for amazing advice. without me, my boys wouldnt have a mommy 😦 and i just couldnt live like that! What number is your story? Xo ashley

      • Hello Ashley… I hope that you’re feeling at least a little bit better today. The weather here in Kansas City has been beautiful, not the customary snow, ice & extreme temperature swings. It’s like the governor called & I got a temporary reprieve. It’s easy to add SAD syndrome to your battle with AS. Sunlight & Vitamin D are a blessing. I have other issues, but a reduction in pain & a relatively mellow stomach are much appreciated mercies. I believe wholeheartedly in the power of prayer & it’s made a tremendous difference in my outlook on life. I have you & other members here in my daily thoughts & prayers. Positive healing energy is being sent your way. This a wonderful group of people & their compassion & support help me get through some tough spots. I hope that someday a cure will be found & that AS will not be passed on from generation to generation. I find that keeping myself occupied… keeping my mind busy helps a lot. Raising a family is no easy task & AS makes simple, complicated. Moderate stretching exercises like Tai Chi or isometrics can be beneficial in maintaining some semblence of flexibility. As a mother raising kids, I’m sure that you get plenty of exercise… just don’t over do it. Take a break when the stresses build up or your body needs a break. Don’t put it off if you can.

        Well, here’s my ugly mug: https://thefacesofankylosingspondylitis.com/a-s-face-0165-john-rhoda/ My Bengal cat Vinny gets plenty of exercise watching me chase a paper ball up & down the hallway. Chase may be stretching it a bit. He’s my personal fitness trainer & he keeps a good eye on me. If I’m feeling a bit low or I’m crashed out, he’ll perk me up a bit with his antics. Love that little rascal!

        Take care,

        John

  2. Oh, how I relate! Thanks for sharing.

    • Thank DeAnna. instead of dr’s paying attention to the medical description of our disease shouldnt they be hearing what we have to say we feel? Be well. ashley

    • Thank DeAnna. instead of dr’s paying attention to the medical description of our disease shouldnt they be hearing what we have to say we feel? Be well. ashley xoxo

  3. Dear Ashley,
    Thank you so much for sharing your story. What an amazing job you did.
    Sincerely Cookie

    • Thank you Cookie. How could i have done it without you!? Youre an inspiration; a walking angel! Thank you for making me feel like i am doing it, instead of doing nothing about it. god bless you and your familu always. ashley xoxo

      • Dear Ashley,
        Thank you so much for your kind words, WE are doing it, everyone who writes their story, submits their face, reads the site, comments and shares it with someone else. We are all doing a wonderful job.
        Sincerely Cookie

  4. Ashley….I totally relate to your story. You described what I feel to a “T” I only wish I could verbalize it as well as you did. Thank you very much for sharing.
    (hugs)
    Marti

    • Marti i procrastinated writing this like you couldnt believe. i waited until the right moment. thank you for reading 🙂 we all feel the same pains, i just read my post and its almost as if i wasnt the one even writing it. be well. keep in touch. xoxoxoxox ashley

      • Dear Ashley,
        I found my self in the same situation of waiting forever to write my faces but when it was the right time it came with ease.
        Thank you again
        Sincerely Cookie

  5. Ashley – thank you for sharing… I relate to so much of your story.

  6. Ashley,

    I am sorry for you and that I can relate to these words.
    How do we fight this disease when our body fights us all of the time? I thank you for your inspiring words.

    You too, be well.
    Jacquie

    • Thank you Jacquie, it’s nice to see some people see my words as inspiring because they truely came from the heart 🙂 I think we all need people to relate to in this fight 🙂 Keep in touch 🙂 Do you have a faces page? Ashley

  7. Ashley,

    I can definitely relate to you. I am also 29 and am the proud mom of 3 precious children (ages 10, 3, and 2). As you said, they keep me going. They are my reason to get out of bed in the morning…my motivation. If it weren’t for them, I probably would have given up a long time ago.

    I was just diagnosed in November 2011, so I am still learning how to live with this disease and still take care of my responsibilities. I work part-time on the weekends, so I am home with the kids all day. I am having a tough time balancing the pain and fatigue with the needs of my children. Obviously their basic needs are met, but I feel terrible when the weather is nice and I cannot even take them outside to play.

    You hit the nail on the head, though, when you said you will never introduce yourself as having AS first. I am the same way; I refuse to let this disease define me. Yes, it is someting I have and will have for the rest of my life, but first I am a mom, wife, daughter, sister, nurse, etc.

    • Thank you Kim, as I said to Jacquie above, we all need people to relate to. It’s nice when I read people that have children that can relate so I know i’m not in it alone either. My best advice is to take it day by day. You never know how you’re going to feel the next minute. For me, I can be somewhat ok one minute, then dying the other. Your children are a blessing though, they are your exercise without having to literally excercise so you don’ t fuse. Be well ! Thank you. Ashley

  8. Few of us are trying to start a Connecticut group. I wanted to know if you would like to join, https://www.facebook.com/groups/183463371768735/

  9. Ashley, your story sounds alot like my everyday life (minus three toddlers). I have a 21 month old and an almost 9 year old and just finished babysitting a 2 year old 5 days a week for the last 9 months. I really can relate to everything you said right down to not being able to open the apple juice so someone gets a juice box. My kids are what keep me out of bed and keep me going too. I was just diagnosed last year but have had symptoms since early childhood. I don’t remember what it feels like to be normal either. I’m not sure I’ll ever learn how to live with this disease. On my good days I still have a bad habit of pretending I’m “normal” and pushing it way too far. I saw on the faces of as information boards that you are from CT. I am 28 and from CT as well. If you ever want to talk (or vent) feel free to message me here or on face book!

  10. Hi! It’s nice when you find people who can relate to one another. I say the worst part about this disease is how random it is. Once second you can be ok (even though your ok is still bad, you’ve just learned to deal with it) then the next second you’re entire body feels like lead, you can hardly move and you feel like you have the flue, oh and the pain, we won’t go there. The worst thing anyone has said to me was by a doctor, who said, “oh, well you look good”. Who the hell says such a thing? I gave him a look, and he knew, he just knew I was about to kill him. Are you on FB? I’ll try to look u up. I”m in the process of starting a non-profit, for people in Connecticut 🙂 and a facebook page. Look me up on FB if I don’t find you 🙂

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: