I am newly diagnosed with AS, and it is an uphill battle but we have to dig deep inside to fight it and I know each of us can, and we all can lean on one another.
Arkansas United States of America
Thank you so much for sharing your story with us.
Cookie Has A.S. said this on October 29, 2012 at 8:06 am | Reply
AS an unknown disease but a very known disease in my life.
It has been so many years that I wanted & yearned to find out what was wrong with me.
I ended up going to numerous doctors finally my regular family doctor said you need a specialist. So upon his pleas I ended up with a quack doctor that said I had fibro but my symptoms continued to get worse, I felt like a balloon about too explode, the inflammation was going way beyond to the extreme.
Finally my sister told me to come to her Rheumatologist in Texas, so I made an appointment; she did x-rays and ran all kinds of tests on me.
So the day we all went in for results ( my mom and sister) doctor thought at first it was cancer but didn’t tell me that she let my sis know it wasn’t looking good, so of course I didn’t know of this only they did when we arrived, doctor said I had the blood marker HLA-B27 for Ankylosing Spondylitis I was in shock never had heard of it , but now it explained why I couldn’t stand without my back having spasms ( had to stand with one foot up on its toes to get relief) also I could hardly walk cause hips hurt so bad, also my mom and I had noticed a hump on my back up by my neck, and my feet were in bad shape also doctor said there are spurs all on both of them( I have to wear insoles to be able to walk and stand now) my hands were getting knots on them ( knuckles and palms) I knew I was in for a long journey ahead , so we started treatment, I am on injections of methotrexate given by myself in tummy or thigh, once a week , it makes me so tired when I give the shot and real emotional, but I am hoping it gets it in check.
Am I scared??? Well who wouldn’t be this is a very serious disease , I stay sick constantly ,get over one thing and get another, this disease effects your immune system & plus the chemo doesn’t help either.
There are good day and bad days, I get so down because I am not me anymore, the fun and outgoing woman I once was, but thank God he has let me be here for now.
I have a lot of support from family & friends but most of all my fiancé and my 10 year old son, they both keep me grounded and focused.
I will not give up & it will take a lot more to take me down, my sister tells me it’s a mind thing, so I repeat over and over.” YOU WONT TAKE ME DOWN, BRING WHAT YOU GOT BECAUSE I AM STRONGER THA YOU ARE AS”
I have to control my stress & not to upset because it makes my issues worse so I try to avoid what I can.
For any of you dealing with this like I am, I can tell you that prayer & leaning on God helps me make it thru.
I have been diagnosed for 2 years now but lived with since I was 30 years old, I am 45 years old now, so it’s been a long battle. Just know don’t give up keep pushing thru to live your life it is for sure a blessing to be here.
I feel there will be more with Ankylosing & it will be finally understood & may have a cure in the future, as of now there isn’t one only ways to control it from doing more damage.
So all of us with AS ‘LETS STAND STRONG &GO THIS BATTLE TOGETHER”
Tina Flowers said this on June 12, 2013 at 9:25 am | Reply
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