2019 My Diagnosis
I have always had back problems and had some injuries to my back in my life that my body was telling me was more serious than what the doctors were saying. One injury in 2013 was settled in a workman's compensation suit with a company. The company settled for a sizeable amount but their doctors kept stating it was mild arthritis and there was no known injury. It wasn't until 2019 that my back pain would come back with a vengeance that would send me scrambling to a rheumatologist to try and get some relief.
The word that changed my life
It was the word spondyloarthropathy that would begin to change my life and not for the better. The first thing after prescription meds that did not work that the doctor wanted to try was chemotherapy. So methotrexate was introduced into my life for a period of 6 months. It was by far the harshest medicine I had ever taken and the costs far outweighed any benefits I saw. I was nauseous constantly and so fatigued I could barely work 20 hours a week. I barely ate and my hair loss was crazy. Thank goodness my hair was really thick before I started chemo. When it was evident chemo was not the right fit after taking it for a bit and then increasing the dose and trying again. Biologic drugs were the next in line and Enbrel was the next thing to try. Enbrel left me fatigued but I didn't notice a difference in my pain. So now we move to Humira I am due to begin it on Tuesday.
Diagnosed with AS
My diagnosis has changed due to the severity of my arthritis, where it is located, and my symptoms so now I am diagnosed with AS. I now have scoliosis as well as bone spurs in my spine. I have days where I cannot walk. I feel as if my spine in my mid-back is caving into my chest and it hurts to breathe let alone move. My whole hips and pelvis sometimes feel as if they are one solid piece making it impossible to keep my balance stand or climb stairs which makes working impossible. I now have depression and anxiety that I did not have before. I refrain from going out in groups of people and have panic attacks when I am out and about too long and get to hurting. I cannot sleep anymore so I am irritable and find myself easily angered. I am also clinically diagnosed as OCD which only adds to my anxiety due to obsessive worrying. If there is advice anyone can give me I am new to this diagnosis I am appreciative to all I can get. I feel lost and alone and no one, not even my own family understands how much pain I am in or what I am going through. So I really have no emotional support.
Do you use the word disability to describe your AS?