Suzanne Black

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What a difference 5 years makes!  I’m Suzanne and I have AS.

I am mom to three great grown kids and have been married for 31 years to my fella.  Nothing about this life has been easy, one of our kids is MR, the trials and heartbreak of that alone is enough for most.  I have been in love with physical activity all of my life, I am 52 and have been “in the gym” since I was 18.

Until I was 47 I ran about 6 miles a day.  I just loved it, would wake up in the morning feeling that I had a nail in my spine, then I would get the kids off and hit the gym and crack it all out.  I didn’t know I had AS.  I would have a minor injury that always felt like a major injury.  The picture is the first knee blowout, then my hip, then the other hip, my neck, shoulders , HANDS (oh, my hands) arms, feet and toes.

I went through years of doctors telling me nothing was wrong, that I was sad, needed to exercise, haha, that I had empty nest syndrome, xrays, mri, blood tests, over and over and over again.  Finally I got a diagnosis, HLA-B27 positive, spinal changes, joints swollen and painful, all the nasty stuff that comes with AS.

So tired all of the time, this is someone who always had too much energy, I drove my family nuts.  I live in the country, kind of, we have a pond, ducks, geese, chickens, dogs and cats, a parrot, mini donkeys, all of them are pets.  I bandage them up when they are injured, feed them and love them.  Basically I am mom to a bunch of live stock!  I love it.  I always worked outside like a madman, a great day was one with a lot of hard work.  I am an artist, If can think it, I can make it.

I defined myself by my abilities.  I was an athlete, an artist, a mom that would shoot baskets, have foot races and climb the tree with my kids. I never sat still.  I don’t know who or what I am anymore.  I loved all of these things, the ability to do it all myself, never depended on anyone.  When the AS opened up, it did it big time.

I did a stint on HUMIRA, I didn’t think it had helped until I stopped using it.  I am now taking Simponi, just started it so it is a wait see.  The pain is incredible, the lack of sleep debilitating, the frustration of not being able to live the life you had is unbearable.  My husband is so caring and patient, we are together, trying to figure out what this future is going to be for us.

So many plans…So that is my pity party.  I’m still trying to get my arms around this.  Here is what I do, when I have a few moments that I have any energy, and am not dying from pain, I do as much as I can, not always the wisest thing to do, but I have to.  I’ll bake something, make something, go out side and smell all of the roses, sit and visit my little Wendy goose.

I don’t worry as much about the spotless house, the perfect lawn(and that’s a good thing because they are neither anymore), I try to find my pleasure, what ever that may be, and revel in it.

I’m trying to make a new normal, I still mourn for the things I have lost, I still cry when I hear one of my running songs.  But that is okay, isn’t it?  This is BIG STUFF.  And every one of us that has AS has lost something, usually many things, and we can be sad about that.  My kids used to call me Wonder Woman, I always tried my best never to let them down, so I draw on Wonder Woman now, I have to dig in deep to find her, she may not be carving Tikis out of a palm stump with a chain saw or racing them up a hill, but she is still here somewhere, and she is POWERFUL!

I love you all, my fellow AS warriors.  Suzanne

Diagnosed with AS in 2009

Uses a cane and standing longer than 5 minutes not possible. The last photo is after my last attempt at hiking 6 months ago.  I don’t know if I will ever get to do that again. I have to use canes to walk then my hands and arms and neck go nuts because I have used the canes.

I love you all, my fellow AS warriors.  Suzanne

Baytown Texas United States of America


One Response to “Suzanne Black”

  1. Dear Suzanne,
    Thank you so much for sharing your story with us. I strongly believe that anything shared from the heart about the truth of our lives is never a pity party.. You are still wonder woman… you will just be accomplishing new things.
    Sincerely Cookie

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