Ehlers-Danlos综合征，，，，or EDS for short, causes me to dislocate almost every single joint in my body during mundane tasks, like bathing, sleeping, and even sitting still. Each day is a rollercoaster because I never know if I am going to be able to walk and act like the typical 25-year-old, or if I’m going to need to wear my many braces while utilizing my manual wheelchair because my body can’t support me that day. It’s like playing Russian Roulette every time I move. Life wasn’t always like this. Growing up, I was extremely active and loved playing outside with my family. Yes, I would often get hurt, but by the time I saw a doctor, I was okay. I remember one day when I was practicing an ollie on my skateboard, I fell, and I could have sworn I severely injured my elbow. My father took me to the ER because I was crying hysterically due to the amount of pain I was experiencing.
船尾er X-rays, the ER doctor came in and asked me how many broken bones I thought I had. He had me guessing until I got to three broken bones, then he laughed and said I was completely fine. This was the beginning of me doubting my own body while thinking my pain was all in my head. Fast forward a few years. I was a senior in high school. I had been a pole vaulter in track and field for some time. We headed outside for our first outdoor practice of the season. As the team was working on a gliding drill, my pole slipped out from underneath me which caused me to fall six feet to the ground. In this motion, my left leg flew to the side. I was fine at first, but a few minutes later I couldn’t stand without being in agonizing pain. This would be the end of my track and field career.
I was doing well after this surgery, but the pain was still there. This didn’t make any sense to me or my surgeon, so I had to keep participating in physical therapy with the hope more time and strength gained would lessen the pain. We were sorely wrong. In December of 2017, just a couple of weeks after marrying the most incredible man, I had my first appointment at Mayo Clinic in Rochester, Minnesota. I had a CT scan that showed my left leg was 35 degrees retroverted (not in alignment with my hip socket), which needed surgery to correct it. On February 5, 2018, I had an anteverting femoral neck osteotomy, which basically cut my femur in half and rotated it to be in better alignment with the hip socket.
这次复苏是残酷的,但它是值得的。船尾er 6 weeks of non-weight bearing, I was learning how to walk again with my new anatomy. I was feeling confident and released to work again, so I started back in the mental health field, for which I was in the process of obtaining my master’s degree. I was even able to get hired for my dream job. Sadly, my dream was cut short. On June 7, 2018, I was attacked by a patient which caused me to rupture my hip capsule. For the next 9 months, my left hip was almost always partially dislocated. By the time I was finally approved by work comp to have surgery to repair my hip capsule, the damage was done. On March 28, 2019, I had a hip capsule reconstruction that put me in a hip-to-ankle brace and non-weight bearing for the next 6 weeks. Those 6 weeks in the brace were the worst 6 weeks of my life.
Because my femoral head had a crater-like divot in it from my hip being partially dislocated for so long, the capsule reconstruction didn’t make a difference. On August 28, 2019, I had my first total left hip replacement at only 24 years old. At the time, we thought the replacement would solve all my problems. Soon enough, I started to partially dislocate my left hip multiple times a day. My other joints started to become more painful, which didn’t make sense because I was otherwise healthy. I felt hopeless and believed I was always going to live in pain because ‘nothing else could be done.’ This is where life gets interesting. In January of 2020, I started to vomit literally anytime I tried to eat solid food. For three months, I survived off Ensure for nutrition because I couldn’t keep anything else down.
约会仅几天后，我第一次晕倒了。在温水淋浴或站起来太快后，我一直在头晕，但这是我的正常情况，所以我认为这很简单 - 正常。由于昏昏欲睡，我被转介给心脏病专家，然后将我转介给了我诊断出我患有血管腔晕厥的电生理学家。在我反复发作的情节中，我开始越来越多地将关节脱位，而这种情况确实不应该导致关节脱位。我曾多次将右膝盖脱臼，甚至在车上刹车时肩膀受伤，以免发生碰撞。我的膝盖继续引起问题，直到2020年12月22日，我将韧带固定在韧带上。从该手术中恢复过来，我撕裂了右臀部的唇唇，同时容纳了固定的膝盖括号。当我能够再次开始减肥时，我站在它们上折断了两个脚踝。
The talus in each ankle fractured and developed avascular necrosis. I am currently waiting on a core decompression for my right ankle scheduled for July 15, 2021, which I can only move forward with if I am able to raise $2895 for a portable electric wheelchair my insurance company deemed ‘convenient’ even though I am unable to be non-weight bearing without it due to my shoulder instability and hand weakness. 3 to 6 months after, at only 26 years old, I will have my right talus replaced. We are expecting my left ankle to undergo the same surgeries at some point but are hoping we can push it off until my right ankle is stabilized. My right talus avascular necrosis progressed extremely quickly, so we really don’t know how much time I have before my left ankle fails me. Earlier this year, I had the opportunity to meet with an EDS specialist who answered all the questions I had about this disorder, explained many of the symptoms I had, and diagnosed me with many of the common comorbid disorders that go along with EDS.
She was able to connect me with other medical professionals who know how to work with patients who have Ehlers-Danlos. As of right now, my diagnosis list is vast. It includes Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome (I can have an allergic reaction to literally anything at any time for no reason), dysautonomia (this explains feeling woozy after showering and my body turning into a limp noodle by standing), bilateral talar avascular necrosis, severe asthma, degenerative disc disease in every vertebra of my cervical spine, spondylolisthesis, temperature intolerance, stress fractures in my lumbar spine, arthritis in almost every joint in my body, ankle instability, dermatographia, TMJ disorder, ulcers, rapid gastric emptying disorder, functional dyspepsia, myoclonic seizures, high blood pressure, vasovagal syncope, heart palpitations, migraines,PTSD，，，，anxiety, and major depressive disorder. I’m sure I forgot a few, but as you can see, this list is vast and includes my whole body.
I often get asked how I can have such a positive outlook and still smile with all the pain and hardship I endure. Don’t get me wrong, some days are absolute hell and I do nothing but feel pity for myself, but I try to make those days far and few because those emotions take more of a physical toll on my body. I am surrounded by the best support group I could ever hope for who make those bad days a little bit better.
This story was submitted to beplay网络一直不畅 by Erin Diffley Kjer of St. Cloud, Minnesota. You can follow her journey onInstagramandFacebook并捐给她的Gofundmehere. Submit your own story here，，，，and be sure to subscribeto our free email newsletter for our best stories, and YouTubefor our best videos.
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‘You’re too complicated.’ I was the girl who was always on crutches or in a cast. My doctors were stumped.’: Woman diagnosed with Ehlers-Danlos Syndrome, ‘My story isn’t over’
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