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