As a kid you’re taught that you go to the doctor when you are sick and they will make you better. As I grew up I realized that rather than making me better, they were making me feel crazy. The horrible stomach aches, anxiety, severe aches and pains, exhaustion, the list goes on and on. It was all in my head and I thought I was actually losing my mind. As it turns out… I was a zebra. It started when I was about 3 years old. My parents went out and my brother was babysitting me. We were jumping on the couch and that’s when my elbow dislocated. It was the first time in a while that my mom had really gotten a night out to enjoy herself and here she gets a call that I need to go to the ER. They popped it back in and I got ice cream. Everything was fine. Little did I know, that was the start of everything. I had a pretty great childhood, my mom always went out of the way to make sure I was happy and doing what I loved. I was a baton twirler until about 6 or 7 and then I was a figure skater. I had a lot of great party tricks like doing the splits, contorting my body in every way imaginable, turning my hand completely around, dislocating my shoulders on purpose, and showing my “double jointed” hands off. I was a pretty healthy kid and the only thing I could really complain about was “growing pains”. I went to physical therapy for my knee a few times to help the pains. After a while figure skating became difficult and I started to complain about my hips. Around my pre-teen years, I got my diagnosis. It wasn’t official but after a handful of doctors misdiagnosing my hip pain and a failed exploratory hip surgery, a wonderful Rheumatologist brought up Marfan’s syndrome and Ehlers-Danlos Syndrome. Basically he said I was hypermobile and that I could hyper-extend and bend in ways that normal people can’t. I didn’t look into it much. I finally found a great doctor who found multiple tears in and around both of my hips. I’m sure figure skating did a number on them. I ended up having two more very extensive hip surgeries before my sophomore year of high school. I completely forgot that I was even diagnosed with anything and went about Junior and Senior year and on to college. That’s when it hit me. I kept it to myself for a while but I began noticing that I would tire out more than the average student. Of course I lived in the freshman Hall on the fourth floor but I just seemed to struggle getting up to that floor more than anyone I knew. I wasn’t athletic but I was in decent shape so it shouldn’t have wiped me out that much. I had a lot of problems with my feet for a while and that soon moved to my hands, my back, my knees, and then my hips again. I got through my first year of college and onto my second and I started thinking that it had something more to do with thyroid than anything. I left the university and took online classes so that I could work full time (in the back of my mind I knew that walking across campus was getting too much for me to handle as well). This is when the chronic illness hit me hard. I remember going to the doctor for my thyroid and even though my thyroid antibody numbers were outrageous there was nothing she could do at the moment. She said those numbers say that I could have a thyroid issue in the future but I don’t have an issue right now. It’s like a warning sign. That day I got a speeding ticket on the way to my doctor’s appointment and when I got home I bawled my eyes out because I just didn’t feel good. At that point I was probably sleeping a total of 12 hours a day between sleeping and naps. I slept because I was exhausted and I slept to escape the pain. My mom being the saint she is, was on the phone with me during this meltdown and brought up that diagnosis from a long time ago. Ehlers Danlos. We hung up and I began to research online. I will never ever forget that night. As I sat on the couch watching videos of people with Ehlers-Danlos and reading articles… For the first time, I felt like I was understood. I wasn’t alone. I wasn’t a hypochondriac. These were real things and valid things that were happening to me. It was terrifying but for the first time, I had a community. That was almost two ally found a doctor that understands EDS. I am slowly making progress but I did just get another setback. I went two years ago and since then my condition has rapidly progressed. I’m trying new medications and after many doctors denying me treatment due to its rare and understudied nature…and saying my condition wasn’t real, I find another doctor’s appointment but this time he referred me to a hip preservation specialist. I had no idea what to expect but her specialty is avoiding surgery and preserving as long as possible. After some X-rays and what felt like forever to get an appointment, she might with me and said that I will probably need surgery again. To those of you who don’t know, the pre-surgery hip tests are almost as traumatic as the surgery itself. I decided I’d get the test over with now and then let myself process the surgery and wait about a year. That’s where I’m at now. What is life like? Well…Flare-ups are happening more and more. Now that I got my hip test results back and found out that I tore both of my labrums again… it’s like my hips heard the diagnosis and decided to cause even more pain. It’s a never-ending cycle. My ribs dislocated a few times in the past year and my shoulder has dislocated twice within the last 60 days. When I go to the grocery store I get anxiety about having to park far away because I know my energy is going to be spent before I even get to the produce section. I used to love going shopping for clothes and now I know when I try on jeans or shirts something is going to pop. I love going out to eat but after work I’m exhausted and all I want to do is lay on the couch and fall asleep. On the inside my body is on fire and my joints are filled with boiling water. On the outside I am a working professional, meeting with clients and hiding behind a smile. That’s my EDS. When I go to bed at night, I try to focus on where the pain is and if it’s any different than during the day. I try to think if that pain point popped at any point during the day and if it may be subluxed or bruised. When I wake up in the morning I take a deep breath and from the toes up, do a quick assessment. Is anything dislocated or feeling out of place? Did I wake up with a flare up? How should I get out of bed to make this as painless as possible? Is my shoulder unstable…because if I push myself up on my shoulder then it’s going to try to dislocate. If I wake up feeling good I tend to overdo it. Because my condition has progressed quickly, I’m not able to predict when my flare-ups happen as well as I should be able to. I could be feeling fine and then all of a sudden I need to sit down because I’m dizzy and my body is on fire. I could be fine and then reach for a pen and then my shoulder dislocates. This condition makes you feel isolated because on the outside, you look like a completely normal functioning human being. It’s hard for people to understand that you can go from not being able to get out of bed one day and then being able to exercise and workout the next day. I am trying to be more vocal and open up about my condition. It’s not a death sentence… it’s just requiring some rearranging in my life. And most importantly I am still the same Katie… But soon you may (once in a while) see this Katie with a cane… Some days you may see her with a back brace…. Some days her hand will be wrapped up or her shoulder in a sling… But you will hopefully always see a smile.. Chronic pain is horrible but I’m not numb and I can still feel. I’m alive and I’m breathing and every day I am doing the best that I can.
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