Alright. I think it’s time for an update! I am now officially living in the windy city – AKA Chicago, Illinois (my first big lifestyle change since my diagnosis at age 18). I had been volunteering at a mental health institution back home for the last year – which now leads me to make my move and study Clinical Forensic Psychology at The Chicago School of Professional Psychology.
I started having symptoms of AS at age 15. I was pretty big into ballet, and I injured my left SI joint during a rehearsal for an upcoming performance. I went to physical therapy, but nothing seemed to really help. So, from that point I basically lived with the pain for a while, until around age 17, when I really started to realize that crawling around on the floor because my back hurts so bad isn’t normal (and neither is an elbow that won’t straighten because of inflammation). So! Doctor time. First doctor told me I was faking – ain’t nothing wrong with this ol’ body. Next doctor put an air cast on my elbow; I cried for two weeks straight because it hurt so badly. Next doctor told me to get a membership at Gold’s Gym; I was just weak, not enough muscle, but because my mom and I were so “annoying” he decided to do a blood test. Oh guess what!? It came back abnormal, so I was sent to a rheumatologist.
I thought this rheumatologist was a God send. (Key word here is THOUGHT) He believed me! He did a full physical, I had hardly any movement in my SI joints, my elbow clearly did not straighten, and my knees were sore; basically every body part had something wrong. He diagnosed me with Undifferentiated Spondyloarthropathy and fibromyalgia. I was pretty pumped that something was so wrong with me that I could get a diagnosis. I had x-rays done, an MRI done, everything he could think of, but all of the tests came back normal. I started on medication, and this is where my two year ride started with the doctor sent straight, I swear, from the Devil himself. He started to not listen, never did x-rays again since that first visit, only gave me 15 minutes of his time per appointment, would literally walk out of the room as my parents and I were asking him questions; he basically didn’t care after he figured out what he thought was wrong with me. I think the tipping point for me was when he told me to get a job as a waitress, because his daughter, apparently, really enjoys it. Did he not get the memo that I couldn’t stand for more than 15 minutes at a time???? Then, we asked to have a referral to UW Madison for a second opinion. Holy moly, he slammed his papers down on the desk, told me to not believe a word this doctor says, and to come back with a full report of what happened. (FYI I never saw him again)
I now see an amazing doctor in UW Madison, who gives me an appointment that lasts at least 40 minutes, answers all of my questions, is one of the smartest people, most likely, in the world and actually did x-rays! I was diagnosed with Ankylosing Spondylitis by her, on the first visit, after she looked at my x-rays, and saw that I have significant damage to my SI joints and bone spurs throughout my spine. I thank God every day for this woman, she is truly amazing. I’ve gone to physical therapy before, but due to insurance, that is no longer happening. I’m trying to get into yoga and since my apartment building has a pool in it, maybe I’ll get into some swimming sometime soon (per doctor’s orders haha).
I am currently on Tramadol, Etodolac, Vitamin D (400IU – a bout of kidney stones in 2012 decreased my dose from 1000IU), Gabapentin, Methotrexate, Remicade (300 mg every 4 weeks), Folic Acid, Fish Oil, and Cymbalta.
With how sick I was upon my original diagnosis, I never thought I would be able to move 3 ½ hours away from home and make a life for myself. (I didn’t even know if I could actually get through undergrad!) But, I think with a good support system, anyone can do anything he/she puts his/her mind to. So, I am eternally grateful to my family and friends. Along with my dogs Maggie and Jack (of course, some of the best support one can get!) and to my best friend in the world, my kitty cat Winston.
From Wisconsin to Illinois, United States of America