I am Amy Sumner-McCluney, 47 yrs old and I have Ankylosing Spondylitis. I was diagnosed in 2008 after having my first flare. i spent the month in bed, with so much pain, and unbelievably tired. My guess is I was so tired from body fighting the pain. I guess you could say I was lucky getting diagnosed so quickly, but it was because my mother, & brother both have AS and I was able to get into their Rhuemetologist.
Looking back I have always had pain in my back. Also have had pain in my hips since 14. But I figured that was due to my breaking hip in 3 places and pulling all the muscles off of butt bone and leg. Let me just say that was not the most fun I ever had in high school.
Anyways back to present time. I am a wife, mother of 3 wonderful grown children, and grandmother to 2 of the cutest little girls in the world. Don’t know what I would do without my husband. He has been so supportive through all of this crap. I am no longer able to work, and don’t get me started on doing any house work. ( Ok I admit it, housework was never on my list of things to do.)
I think the worst part of having AS for me is that I can no longer do all the things that I enjoy. Some days you will see me moving around pretty good, the next I my have a cane or walker. That is the hardest part for people to understand is that we do have good days where we seem “normal”. But then we have bad day or a flare from Hell as I call them and for me on those days lifting my foot off the floor to walk is a nightmare. My husband jokes that his 106 yr old Granny walks faster and stands up straighter then me. But people will just stare at me, friends that don’t understand AS will ask what is wrong, or I have even had people say that I must be faking it, or looking for attention. The worst part was when some stranger watched me park in Handicap spot, and waited for me to go into store. She then proceded to yell at me, saying I was in handicap spot, I told her that yes I was and that I had a card saying that I am handicap and had right to park there. She then told me that because I had my 2 yr old grand daughter with me that she didn’t believe that I was, or that I needed to park there. I offered to explain to her about AS, offered her my Dr’s name and number, even asked her to walk with me to get my meds and talk to Pharmasist . But she said that she had no desire to talk with me anymore, nor to know about what I have, because it’s people like me that rune it for others. Now I am not usually an angry person, and never raise my voice to strangers. However I was beyond speechless to be attacked by a stranger, and in front of grand daughter, and everyone else in ear shot. Alls I can say is I lost it. I told her that she is a B-itch, and to educate herself before condemning me, or anyone else. And that it is people like her that make those of us with “Invisible”, little known, not talked about diseases, feel unworthy of help or support, why we don’t complain, or talk about what we are going through, or asking for help.
Needless to say when I got to counter to get my meds, the pharmasist asked if I was ok, why crying and shaking. When told him about woman he apologized that that happened to me, and said I should not have had that happend to me. That he knows how I have suffered, and doesn’t know how I have been able to what I do.
Since my journey with AS began I have been on Steriods, Enbrel, Humeria, Remicade, currently on Simponi, Sulfasiazine, Folic Acid and Vicodine. Of course add to that meds for major depression, Thyroid issues, and high cholestrol. Some days I feel like all I do is take pills, or get shots.
Minnesota, United States of America