Today marks 5 years of Cookie’s Faces of Ankylosing Spondylitis, it is also 4 years since I have followed everyone’s stories, I always said I would contribute my own, but never gotten around to it. This month marks 20 long years of battling with this disease. It is time to give my battle a face. It has been 20 long years of not letting it defeat me, of being courageous, of never losing hope, of no one understanding what I am actually going through. 20 long years of judgement and misdiagnoses by society. As of today I have no treatment regime to manage this disease.
Hi, my name is Stephanie Subedi and I have been fighting this disease since I was 13 years old. I am a blessed, disabled, single-divorced mom of two beautiful. My children give me a reason to keep going. Currently I am a student at Pennsylvania State University, I am taking 5 classes. Many people ask me why? Well, at the ripe age of 32, almost 33. I realized that I worked a corporate career for 10 years and I had to claim disabled. Since social security is my only form of income now, after my divorce me and my family survive with just about 10.00 after bills are paid. I can support my family on this. Yes I feel lucky I have income, and health insurance, but it is not enough. So somehow I am trying to figure out a way to bring in a better income and still battle this disease. I have no outside support, expect those of a few close doctors that have been following me for years. So how do I do it, you ask? I never give up. The cure could be in the mind of someone, who couldn’t afford an education.
My story is long and exhausting like most of ours, so I try to keep it short and sweet, some parts are missing, and just let my thoughts flow from my keyboard. I grew up in a rural part of Northern New York. I will never forget the day. It was basketball season, I was in 8th grade and one day I woke with the most unbearable pain in my eye. It felt like someone was poking my eye and trying to pull it out at the same time. My dad took me to the doctor, after several visits, they diagnosed me with recurrent pink eye. It had gotten so bad, my eye was almost swollen shut. My dad took me to a specialist an hour away. They said I was allergic to the sun. I was given steroid eye drops to help clear it up. It did clear it up but never took away the pain. So we drove 4 hours to Syracuse, where I was diagnosed with Rosacea, I was very fair complexed. So I started the tetracycline medication. My family support system, was near nonexistent. I was told several things from they don’t have the money to take me every time my eye would flare or the medications would cost too much. We didn’t have health insurance growing up. I would get yelled at for being sick, but expected to pull my weight around my home. I was given a cold wash cloth to help ease the pain, p.s. parents that never works. I struggled through school. My dad kicked me out when I was 17, not because I was a troubled child, but because that was the level of dysfunction that was in my home. I can’t explain it. Even still I ended up graduating with honors and a scholarship. Well because I was 17 I relied on my father’s signature to go and he didn’t want to sign. So my estranged mother saw her opportunity and moved me down to Virginia to live with her. I was working full time, doing a part time internship and going to a local community college full time. My mother had mental health issues and ended up kicking me out. I dropped out of college, lost my internship and eventually quit my job because I had knee surgery and living in my car. It must have been God’s will because I stayed in remission for 2 years. I landed a great job with amazing health insurance and stayed there until 6 years ago, I was forced to quit due to my disability.
It was my first six months, into my new job and I flared worse than the first time and times after that. The inflammation was bouncing back and forth between my eyes, I went to an eye doctor, who saw me days, nights, and weekends even though I didn’t have the money, he still saw me. He sent me to several rheumatologist one said Bechet’s disease and the other one had no clue. I tested positive for HLA-B27. S this eye doctor sent me to the National Institute of Health. Ophthalmology, because I was losing my vision rapidly. The prednisone wasn’t working, methotrexate didn’t work, and the NSAID’s didn’t work. My case was hopeless, but given I was just barely 20, it didn’t matter to me. I didn’t take it seriously. Then the diagnoses came, I had Ankylosing Spondylitis. They wanted me to start a protocol drug, called infliximab. I had no choice, nothing was working. After 2 years on the medication, it got approved by the FDA, for the public to use. I never would of though 12 almost 13 years ago, I would be on this medication for 10 years. Yes, I would say it helped with managing progression. I didn’t have spinal changes until the past couple of years. However, while I was working, I was discriminated against, told my disease didn’t exist, ect. Ect we all hear it. No one understood what I went through to be there every day. In the last year or so I started experiencing random symptoms and was told by drs. That it wasn’t me getting immune to the remicade. In June of this year, I have stopped remicade, due to reaction. I am currently waiting 6 months to get the drug out of my system before playing Guinea pig again. Remicade saved my vision. Over the years and all the diagnoses, I felt empowered to be better than the disease. I worked hard and still do. Now I feel the disease is winning. I lost my purpose in life, but I look at the faces of my children and I keep going. I am all they have. I am currently flared and it’s in my bones and my eyes. The truth is I would go back to the doctor to treat the symptoms, but why? It takes 80mg of steroids to ease a flare now, because I have been on it so much. This past week, I got told I have ulcerative colitis. Every day my children see me suffer, everyday. Everyday my children see my strength, they see me never giving up. My son is delayed and my daughter, I would say is gifted. They see me still fighting this soul keeper of a disease. It gives them hope, that no matter what they weather in life, they still keep going, even if that means going on blindly you still keep going. As of today, I have a different moto, one day at a time until the plan is clear. So this is where, I am 20 years later. After a very traumatic divorce. I am raising my two children on my own, I bought a house, I bought a car, I am providing a future to my children through education, and it is not perfect. But I am a warrior and I am still standing tall after all these years, I have faced depression, a mental breakdown, homelessness and tons of other shit life throws your path. The people who have A.S. are weathering through the toughest unknown storms and all the side effects from stereotyping to plain old discrimination with doctors and society. My fight isn’t over in fact it is just starting a new chapter. Happy 5 year Anniversary Cookie and FoAS, and Happy 20 years into my battle, my story of learning to fly with broken wings.
Virginia, United States of America