I am 26. I’ve had symptoms since age 13, but was only diagnosed this year in March. For me, learning I have AS was a shock. I’d known my whole life I could get it, but I was also told that there was only a tiny tiny tiny chance I would get it because I am a female; I also got in my head that after I turned 20 I would be past the window of getting the disease. From 20 years old to 26 years old I was in a period of relief that I had made it past the window of diagnosis, so you can imagine how much more shocking it was when I was diagnosed.
When I was barely a teenager, my hips began hurting – aching, throbbing, cramping. I was always (and still am) a very fidgety kid, constantly changing seating positions because I was never comfortable for longer than 5 or 10 minutes at a time. I never realized other people my age did not experience that sort of chronic, constant pain that limited certain activities for a gymnastics-loving kid doing splits down the sidewalk. Middle school also began awkward, embarrassing pain in my lower back that did not allow me to prop myself up on my elbows while lying on my stomach for longer than a minute without readjusting. Fast forward to my second year in college, add to the hip pain the fact that I was barely sleeping through the night due to severe spasming in my lower back, accompanied by chronic, aching pain. The pain affected my ability to stand and walk for long periods of time, which made it hard to perform in chorus concerts. I discovered a stretch that was extremely painful but the only thing that would relieve my more-painful back – a slow, standing “crunch” where I would flex my abdomen and bend over forward slowly and “roll” my vertebrae forward and down one by one, which would eventually make something pop and give me relief – for a few minutes. This stretch is now an unbreakable, necessary habit of mine.
Then, back in 2007, An MRI showed the beginnings of my lower three vertebrae fusing together. It was blamed on sports injuries, and I accepted that. Some of my soccer teammates joked me for stretching too sensually because my back remained straight when I bent down and it looked like I was sticking my butt out on purpose. My mind was far from considering the possibility that I had my father’s disease, which is so bad that he cannot straighten his back because he has full kyphosis – if you can imagine, it’s difficult to accept a life-changing diagnosis like that in the prime of a college soccer career. So I ignored the symptoms as much as I could and dealt with the pain, unaware of the damage I could be preventing if I only researched my family history more to learn that my symptoms were in line with AS.
Fast forward again to 2013, I’m 26 years old, and I found out through an email conversation with my father that I have AS. He never knew I had all the other painful symptoms since I was 13 years old, or he would have told me 13 years ago that I have AS. After an abrupt self-diagnosis, I somehow fought my way through the medical and health insurance loopholes in early February to 1) get health insurance (I was working part time with no insurance option, so I had to find a private plan I could afford – which I couldn’t) 2) Find a primary care physician who would refer me to a Rheumatologist without doing tests or looking for other diseases first 3) Convince the Rheumatologist that I have this disease without going through all the MRIs, x-rays, blood tests so I can get on meds as fast as possible.
Here’s a more detailed timeline of the past eight or nine months:
I fought head and chest colds from October 2012 to late January 2013 and eventually found myself visiting Urgent Care twice in 10 days in early February – I was having trouble filling my lungs to the point that I felt my brain losing oxygen. I emailed my father, with whom I’ve had limited interaction my whole life, and asked him more about my paternal health history. The reply: “Dadie Anna (his nickname for me), you have what I have.” The onset of each of our symptoms matched by age, and his Rheumatologist unofficially diagnosed me from information my father shared with him. It turns out some people that have A.S. have restricted movement of their rib cages due to spinal fusion, which affects their ability to breath. I SHOULD NOT have to fight to fill my lungs every couple minutes; I should not have to live life that way. I should not have to deal with the pain in my lower back – the constant achy, throbbing, bone-on-bone pain that comes daily now.
My Rheumatologist started me with Meloxicam. I’m good at hiding my pain (not intentionally; you know we ASers are prone to managing pain better than the average being), so the rheumatologist probably didn’t think my AS was as “serious” as other cases. A month later, after having raised $2,500 for the Arthritis Foundation during the Arthritis Walk I was able to meet several local Arthritis advocacy folks and learned I could use their help to push to get a TNF-blocker asap. So, at my second appointment (June) I didn’t leave until I got a prescription for a TNF-blocker – the Dr. chose Humira. I got the TB test, the Humira Copay Card, and all the other necessary barriers crossed and within a week of the appointment I got my first delivery by UPS. It was two weeks after I requested a TNF-blocker that I had my first injection. With it I’m taking Methotrexate and Sulindac, but may be replacing the Sulindac with steroids (as much as I hate steroids). It’s now the first week of August and I’ve had three Humira injections. We’re not pleased with how the Humira’s working, but giving it more time before trying something else.
I’ve been extremely depressed; I’m still grieving. I cry, a lot. From physical pain as well as from anger and sadness. I feel as if I’ve lost a loved one; my body has stopped working the way it used to; I still experience fatigue daily; I fight with doctors, pharmacies, insurance companies, and my own limitations; I constantly worry about paying for my doctor visits and my healthcare and my drugs. I constantly think about my future and how a lot of things I wanted to do with my life may not happen now. I don’t know what tomorrow looks like. I feel punished; this isn’t something I asked for. I ask, “Why would this happen when I’ve been so healthy and active. HOW could this happen – to ME?”
I know that I have a disease that will progressively get worse no matter what I do. I know that I have a lot of serious thinking to do if I decide I still want to have children that are biologically mine. I inherited AS. My brother didn’t. Why on earth would I want to even pass the CHANCE to someone else?
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead
California, United States of America