
Search
3137 items found for ""
Blog Posts (2121)
- Finding Meaning in the Miserable Malalignment
I Thought Pain was Normal I have always led an active lifestyle, running, hiking, and playing tennis, and soccer since childhood. Despite staying active, I often experienced pain in my legs and thought it was just a normal part of being active. It wasn’t until college that the pain became severe enough to make me question whether it needed medical attention. Pain and its Effect on Daily Activities The pain eventually began interfering with even the simplest daily activities—like putting on pants or stepping in and out of the shower. Fatefully, I was studying to become an occupational therapist, a profession dedicated to helping people engage in meaningful activities of daily life. Yet here I was, struggling to engage in my own favorite activities and facing difficulty with basic tasks because of the pain. My First Diagnosis Right after college, the pain in my hips became unbearable. After consulting with an orthopedic surgeon, I was diagnosed with femoroacetabular impingement (FAI) and a labral tear in both hips. Essentially, the head of my femur wasn’t sitting properly in my hip socket, which caused a tear in the cartilage around the joint. I underwent three arthroscopic surgeries—two on my right hip and one on my left. Though the surgeries provided some initial relief, the pain never fully went away. The Answer to My Pain: Miserable Malalignment Syndrome Three years later, I could barely walk because of the pain. My legs looked and felt crooked, and my knees knocked together. I consulted several doctors before finding one who diagnosed me with a condition called “ miserable malalignment syndrome .” Despite its unfortunate—and accurate—name, I was relieved to have a diagnosis after years of struggling with chronic pain. What is Miserable Malalignment Syndrome? Miserable malalignment syndrome (MMS) is a condition in which the bones in the legs are abnormally rotated. In my case, my femurs (thigh bones) pointed inward, while my tibias (lower leg bones) pointed outward, causing significant pain in the hips, knees, and ankles. My Surgical Journey Since the start of my journey, I have undergone nine surgeries, with four more to go. Four of these procedures are " osteotomies ," in which my femurs and tibias are surgically broken and realigned, then stabilized with plates and screws. In addition, I will need hardware removal surgeries and labral reconstructions —a procedure where the torn cartilage in my hip joint will be removed and replaced with a cadaver labrum. Finding Purpose Through the Pain As I approach my tenth leg surgery and reflect on my journey so far, I have come to realize how much I have learned along the way. There were many times when I felt like giving up—both on life and on my recovery—because I couldn’t engage in those things I loved the most. My path out of despair was finding purposeful and meaningful activities in my daily life, including beginning a book about my MMS journey, writing poetry, learning a new language, and educating others about this condition on my Instagram account and through podcasts. This emphasis on finding purpose is also a core principle of occupational therapy. Healing Through the Break Sometimes, we need to be broken in order to heal. My legs were surgically broken so they could be put back together. Like a bone mending after breaking, I am growing stronger with each day of recovery. Although I have felt both physically and emotionally broken at times, I know that staying engaged in meaningful activities will help my healing process.
- Jessie’s Story Update
Jessie is a resilient and inspiring individual who has turned a spinal cord injury, which left him unable to walk, into a source of strength and determination. Despite this life-changing challenge, Jessie has pursued his goals with unwavering passion and optimism, proving that limitations are often just a matter of perspective. With a bachelor’s degree in anthropology, Jessie has taken a creative and impactful route as a sit-down comedian, filling venues with sold-out performances that blend humor and powerful storytelling. Beyond comedy, he serves as a dedicated high school basketball coach, demonstrating leadership and breaking stereotypes about what people with disabilities can achieve. Jessie firmly believes that his wheelchair is not a limitation but a tool that empowers him to redefine success on his terms. A passionate advocate for disability representation, Jessie uses his platform to challenge societal perceptions and celebrate diversity. He has appeared on Good Morning America, where he promoted adaptive clothing, and has collaborated with major brands to champion inclusivity. Jessie’s vision extends to empowering the next generation through a children’s book series he is currently developing. The series focuses on raising disability awareness in urban communities, fostering understanding, and celebrating differences. Jessie’s philosophy is clear: he views his disability as a superpower, not a barrier, and refuses to make excuses. Through his achievements, advocacy, and creative endeavors, Jessie continues to inspire others to embrace their unique abilities and live life without limits.
- The Long Covid Chef
I was an executive chef and director of operations at one of Tampa’s premier catering companies when I contracted the Delta variant of COVID-19 in August 2021. After two weeks of battling illness at home, my condition worsened to the point where I could no longer breathe, prompting my partner to call an ambulance. Upon arrival at the hospital, I was intubated and placed on a ventilator within 24 hours. Shortly after, I was put into a medically induced coma to allow my body to heal. The doctors were uncertain I would wake up and advised my family to prepare for the worst. When I finally awoke, I was paralyzed from the neck down, likely due to COVID-induced Guillain-Barré syndrome. I faced the daunting challenge of relearning basic functions through physical and occupational therapy—talking, walking, feeding myself, and even putting on socks. Four months later, I was released from the hospital in a wheelchair, unsure of my recovery journey. Just four weeks after my discharge, I was diagnosed with Long COVID. While some symptoms improved, others intensified. Today, I live with Long COVID, Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Rheumatoid Arthritis (RA), and suspected Fibromyalgia. I was disabled by COVID. I can only stand for about 3 to 5 minutes at a time and walk approximately 50 feet before experiencing severe fatigue. Daily, I endure chronic pain that feels like waking up with the flu, the worst hangover, and having been in a terrible car accident—every single day. My brain fog is a frustrating reality; it’s a dismissive term for the significant word-finding difficulties and memory issues I face. I am about 75% housebound. When I first learned about Long COVID, I felt profoundly alone. Many people didn’t believe me, having experienced only mild COVID symptoms themselves. They simply couldn’t fathom how someone could suffer so severely from “just” COVID. My five-year live-in relationship ended, I couldn’t return to the job I loved, and I felt lost. I moved back in with my supportive family, who continue to be my caretakers. From this experience, Bloom-19, a Long COVID advocacy initiative, was born out of my desire to help others feel less isolated and to share my journey of healing through food. As The Long COVID Chef, I aim to dismantle ableist narratives by creating recipes friendly to those with chronic illnesses. I focus on gluten-free, dairy-free, and refined sugar-free options while using shortcut ingredients to keep them easy to prepare. I don’t offer nutritional advice—instead, I ask you what you enjoy eating, your dietary restrictions, and your functional capacity so I can tailor recipes to your needs. My goal is to spark joy in food for those living with disabilities. I also share food safety tips about potential food allergens and foodborne illness. The WHO estimates that 600 million people worldwide fall ill with foodborne illness each year. These types of illnesses can be much harder to endure if you are a person living with disabilities. I’ve had to confront my own internalized ableism, and I’m still learning every day. I’m proud to support a community that has given me so much.
Other Pages (1016)
- da849fde-c215-4a46-8051-0f28dda188a7
Is product of the day B00GRHHC2E 18+ 18+ 18+ Choose main category Add Upload Image JPG / PNG files only Add posts Camilla Can Community Add post to product The Long Covid Chef Add post to product A boy's journey with dyslexia Add post to product Being Part Of The Chronic Conversation! Add post to product Kiersten’s story Add post to product Navigating a Rare Path: My Journey Through the Healthcare System Add post to product A story about a freak of nature Add post to product Sparkling through adversity Add post to product Life as a disabled mum Add post to product Bold Journey Add post to product A Miracle In the Making Add post to product My story of tribulations and victories Add post to product From Drop Foot to Disability Add post to product Author Makayla Spencer: Origin Story Add post to product Accepting Disability at a Young Age Add post to product Filter by selected posts Load more Delete Product back Update Failed update products
- 097d6f86-e73a-498c-a1d9-ed3ca49835d6
Is product of the day B08C4YZ25R 18+ 18+ 18+ Choose main category Add Upload Image JPG / PNG files only Add posts Camilla Can Community Add post to product The Long Covid Chef Add post to product A boy's journey with dyslexia Add post to product Being Part Of The Chronic Conversation! Add post to product Kiersten’s story Add post to product Navigating a Rare Path: My Journey Through the Healthcare System Add post to product A story about a freak of nature Add post to product Sparkling through adversity Add post to product Life as a disabled mum Add post to product Bold Journey Add post to product A Miracle In the Making Add post to product My story of tribulations and victories Add post to product From Drop Foot to Disability Add post to product Author Makayla Spencer: Origin Story Add post to product Accepting Disability at a Young Age Add post to product Filter by selected posts Load more Delete Product back Update Failed update products
- 196fd3b8-eae4-44a5-94dd-91fd96837ede
Is product of the day 1622037103 18+ 18+ 18+ Choose main category Add Upload Image JPG / PNG files only Add posts Camilla Can Community Add post to product The Long Covid Chef Add post to product A boy's journey with dyslexia Add post to product Being Part Of The Chronic Conversation! Add post to product Kiersten’s story Add post to product Navigating a Rare Path: My Journey Through the Healthcare System Add post to product A story about a freak of nature Add post to product Sparkling through adversity Add post to product Life as a disabled mum Add post to product Bold Journey Add post to product A Miracle In the Making Add post to product My story of tribulations and victories Add post to product From Drop Foot to Disability Add post to product Author Makayla Spencer: Origin Story Add post to product Accepting Disability at a Young Age Add post to product Filter by selected posts Load more Delete Product back Update Failed update products