I am 30 years old, happily married with two beautiful sons. Here is my AS story.
Last January I finally was living out my dream at the age of 29… I was back in college!! I was studying to earn my BS for Social Work. I love helping people and I finally found what my passion (outside my family) was in life. I wanted to help the homeless community and help stop the bad stigmas that are attached to the homeless. I was in my 3rd semester and I noticed my hands were so sore and began to swell. I thought, well I am an “returning adult” student. They say school is harder the older you get but I kept thing “I am not that old am I?” As the semester continued my hands became so much worse I could barely hold a pencil and my knuckles were HUGE!! I made an appointment with my general practitioner once my finals were over. I put the appointment off because I mainly didn’t want to interrupt my schooling and secretly I knew something was very wrong but didn’t want to have to retake the semester. My family does have Rheumatoid Arthritis on both sides so he tested me for it. It came back negative and my X-Ray showed my hand was not broken. He was at a loss. He referred me to a hand specialist who did X-rays again but everything was “fine” but they all seemed concern because my knuckles were 4 times bigger than they should have been. She refers me to a Rheumatologist who diagnoses me with Seronegative RA on my 30th birthday. I kept joking with friends by saying “Well they say your body starts going down hill at 30 but man I didn’t think they meant this bad this fast!” I tried using humor as a way to cope. That was the hardest news I have ever received! A chronic disease with no cure but we should be able to find something to help with the symptoms and pain. How does one wrap their head around this information?? I was very angry and in denial as we kept trying new medicine trying to find something that worked. My insurance company stopping me at every corner saying no matter how bad you are you must fail at a certain brand first before you will be covered for the drugs your doctor believes will actually help. I always felt like I was 8 steps backwards then where I needed to be, and I still do!! After 6 months of dealing with my first Rheumatologist I thought a second opinion is never a bad idea. So in February of 2014 I met with my new and current Rheumatologist who reruns my RA test which magically comes back negative again. No shock there all my tests have been coming back normal since August. She also ran the genetic blood test which has shown a link with AS. She also ordered X-rays of my SI’s. The genetic test came back positive which we know does not confirm anything and my X-rays came back inconclusive so off to a MRI I went. I was only out of the MRI for an hour and a half when the doctors office called with my results. I knew this was bad and I remember my heart sank and I felt helpless waiting for the nurse to tell me the results. My MRI proved I had AS and that I had erosive disease of the right SI and there were mainly concerning holes in my SI from the inflammation. My first reaction was HOLES?!?! That is when I realized what my doctor meant when she told me how AS is compared to or similar to RA. I’ll never forget her explanation AS is like RA excepts it has a worst twist. We started Humira right away and I failed with it. I am now waiting on my insurance to see if they will approve Simponi.
That is my factorial story. Here is what living with AS is like. I cannot do 50% of the little things I used to do daily without an effort or thought process. Examples buttoning ANYTHING, washing in the shower, climbing stairs, easy open containers…false advertisement. Getting on the floor to play with my youngest, playing ball or going on walks or bike rides with my eldest. Holding my husbands hands is very slim to none, Hugging anyone without it hurting, having no problem smiling without having to Russell up energy to do it, and the list goes on with car rides, talking, eating, getting any kind of good sleep, being able to do anything sports related. I cannot live a “normal life” anymore or at least not the normal I used to be. Having to refigure out your whole life to the point of who I really am anymore. I feel like a problem to my family and friends. Trying to figure out what drug I should take due to the many risk factors that can be very severe. I struggle with depression and anxiety on a daily basis and I have officially turned into my own worst enemy because I compare who I am today to the women I knew before the diagnosis.
Like others my story can just keeping going on.
Wisconsin, United States of America