top of page
User Name

Search

2127 results found with an empty search

  • I Am More Than A Statistic

    Height is just a measurement I’m more than a statistic, 1 in 40,000. I’m a daughter and a sister. A woman living with achondroplasia, the most common form of dwarfism. A condition that some see as a basis for ridicule. There’s more to me than people know. I’m a lover. A fighter. A rule breaker. A woman determined to change how the world views differently. Don’t judge my story (or anyone else's) by the chapter you walk in on. Some days I’m strong. On others, I throw my hands up and sit in my valley of lows. I have been through some serious shit and I don’t always let it show. I take on the world one day at a time with sass in my stride, glitter in my veins and love in my heart. I am rather dramatic, often talking with my hands. I am bold and don't mind standing out; this is coming from a woman who’s been kicked out of a bar for glitter-bombing the dance floor. Bubbles are one way to my heart; in a bath or a glass of champagne, please. Explosive, peeing your pants, I can barely breathe, laughter, fuels my confidence. When I laugh there are no boundaries; I am unapologetically myself, the boundaries separating me from society — erased. Height is just a measurement I don’t care how long your legs are, you can only take one step at a time. My steps are small, thoughtful and backed by purpose. They constantly lead me further and further outside of my comfort zone. The result can be messy. And there is always magic within that mess. My scars tell a story. Superficial proof of perseverance. When I’m feeling rebellious – an extravagant tale of how I was attacked by a Great White might become my explanation of a stranger’s very concerned question, “What happened?!” All in good fun, of course. What really happened is the story of a girl who began the pursuit of a more functional future at the age of twelve. Sometimes I get caught up in this story that I am stuck, with no way out. It’s never true, my inner light burns bright, showing me the way. Pain is something that I am really good at. Physical or emotional. I expect it. I tolerate it. I hide it. I know it. And I take full responsibility for it. little legs and a big heart In this lifetime we have been gifted one body, or soul suit as I love to say, and one voice. This journey, living, is a consistent practice of discovery, through trial and error. We learn to speak as infants, making noises and understanding how to communicate our needs. But our voice, the one we come to find later in life, what leads us to our dharma, it stays dormant until you are ready to own it. When you find it, you’ll know. I've found mine and I know how to use it. I strive to motivate people, no matter what their story is, to stay positive in the face of adversity. A true story, one of authenticity, has the potential to heal as much as modern medicine. Connections are best made by revealing our weaknesses, challenges, and failures; WE ALL HAVE THEM. My insatiable curiosity and desire for authentic connection are what fuel my love for friendship and helping others. I am an agent of change. I challenge the status quo. I am also a yogi; one who is far from the mainstream individuation of a practitioner seen on present-day social media. These days, the only posture I have perfected is savasana. Defining people instills limitations; putting them in a box, giving them a label. Yuck. I am beautiful, not in words or looks but by simply being. There are as many shades of different as there are of people. I am learning to ignore the harsh words, stares, and laughter. I choose to embody an unfu*kwithable, compassionate and loving spirit. I am dropping the judgment and embracing the now; what is. All strong souls need strong souls in their life, especially when you’re on a path of deep healing. Yes, we all have to do our own work AND when you have a courageous, honest being [or beings] who ride the ups and downs with you, it serves as an incredible source of inspiration. Grateful am I for those who have joined me on this path and for those whom I walk alongside as a witness to their journey. Individually we are capable. Together we are unstoppable. My name is Kristen. I have little legs and a big heart. I am enough and so are you.

  • Living the different life with a heart disease

    The Story of my life Now I'm gonna tell you the story of my life. It started as I was born. I was born in a small town in the North of Germany on the 21st of August. My parents were happy that I was healthy. So my journey started. After four years and a few visits to the family doctor later, my doctor heard a heart noise. He said to my parents to visit a clinic for heart health a few hours away from our home. So far so good. My parents drove with me to the clinic where I had to have some physical examinations. The doctor there said to my parents that they can't help me anymore. Never give up My parents were very shocked but didn't give up and searched after a different clinic. They found the "deutsches Herzzentrum" in Berlin and drove with me to this clinic. That was the best decision they made. The doctors there also made a lot of physical examinations like heart catheter, which I really hated. Living with a heartdisease There they told us that I had a ventricular septal defect (VSD) and also pulmonary hypertension. Now I live for 17 years with this disease and that despite the first doctors told my parents that I may be dead in by my teenage years. I like to ride my horses or to cut videos in my free time.

  • My crazzzzzzzy life with Chronic Illnesses

    How the Chronic Illnesses began... My health issues began to take over in 2015. After a good month of severe weight loss (losing a good 20lbs in a week!), dehydration, losing my vision, extreme fatigue, etc - I was diagnosed with Type 1 diabetes. Fast forward to 2018, my weight began to drop again. I began noticing blood in my stool for months on. In April, I was finally diagnosed with Ulcerative Colitis, a severe case of it. I was extremely bloated, so much I had trouble breathing. My resting heart rate was 160+ (bpm). No medications were working for me. I went back into the hospital in May, just to find out that my whole large bowel har perforated and I needed emergency surgery to remove my large intestine. I am now living with an Ileostomy, a bag that saved my life. This whole year has been eye-opening for me. Anxiety and depression have really kept me away from being social. I look at my body and sometimes, I hate the way I look. It has been a constant battle, having to accept how things are now. Having to deal with two chronic illnesses, along with college and work has been a real pain - but a huge accomplishment as well. “and here you are living, despite it all” (Rupi Kaur), for anyone who needs it. 💛

  • How Rare Disease Took My Life

    Rare disease My name is Mahmoud. I am 13 years old and at 7 months old, I became weak and lost balance. I experienced weakness in all my muscles. My mom took me to hospitals and doctors. Everyone guessed something different until I turned 4 yrs old and my mom had another baby. The baby lived a normal life and walked until he turned 2 yrs old and the same thing happened to him. He lost all his skills, and we had to use strollers. Mom worked very hard with us and did her best to let us be as normal as others. Achieving a lot with Rare Disease I never talked or walked. I couldn't write or use my hands. My brother's disability was better than mine. He speaks with some difficulties, he is toilet independent, and he can stand with support. My mom let us join a school because we were smart. Thank God this disease doesn't touch the brain! We both achieved a lot. Missing my mom & brother In 2017, I had a major operation because I had a dislocation. I had to wear a cast like pants and stay in bed for 45 days. I became weaker and I stayed for a long time in the hospital because I had a very bad lung infection. Everyone tried their best to keep me alive, but after one year almost before two months, I passed away. I achieved a lot in my life in school with my mom and my brother. I am doing very well up in heaven. Not all people with special needs can continue life, but they can leave something good behind them. Their history, achievements, memories. The only this is, I miss my mom and my little brother, but I believe that mom will continue as I know her with strong and positive energy. I love you, mom!

  • Being Stubborn about Muscular Dystrophy

    Being Stubborn about Muscular Dystrophy I was diagnosed with GNE Myopathy, a form of Muscular Dystrophy, in my late twenties. It is untreatable, and progressively weakening my legs and arms. I know that I only have a few years until I need to use a wheelchair, so I asked myself what I wanted to see when I looked back on this part of my life. I'd always wanted to travel, so I packed up everything and went to India and Asia for three months this year, with just a walking stick for company. It was really physically (and mentally) challenging, but I am so glad I did it. I was stubbornly determined to at least try, and I proved to myself that I can still do hard things, even if I have to adapt and slow down my approach somewhat. Now I am building a life that will make me happy, even as I face increasing mobility issues. Things can feel very difficult, but I'm determined to keep finding the best in every situation.

  • Believing in yourself.....

    Sitting volleyball inclusivity I want to introduce my friend Katie who I have introduced to the sitting volleyball game. She continues to defy everything I ever thought about what you needed for the sport. She’s proving to all of us who play and coach this sport that you too can play if you’re missing a limb. Smiling her way through it all. From a coaching standpoint, she’s completely changed the way I have looked at our sport for the past 18 years. I would like other kids, adults, and veterans to see they can play too. Don’t ever let limb loss stop you.

  • A miracle in the making

    My story Hello, my name is Jessie. Take a good look at me, does it look like I went through something? Does it look I have beaten the odds and have a strong story to tell? Last August, I had a surgery on my spine due to a car accident I was in. Before the surgery, the doctor overdosed me with anesthesia, which caused my heart to stop three times. My heart stopped for more than ten minutes, meaning my brain wasn’t getting any oxygen for ten minutes. Statistics say if your heart stops for more 7 minutes you’re considered brain dead. However during the 10 minutes, my organs were failing, eventually, my kidney failed, I couldn’t breathe on my own, and I suffered something called anoxic global brain damage to my brain and I was declared brain dead. They said I wouldn’t be able to walk, talk, go back to school, nor be Jessie again. One thing I would say if you don’t know a man by the name of Jesus, get to know him. I’m the miracle testifying today that miracles are indeed real. My family and close friends had so many individuals praying for me. By the grace of God, I can see a brighter and hopeful future ahead of me. One more last thing, if God can do it for me, he can definitely do it for you. Plus don’t forget to follow your girl @Jvssie_.

  • World, listen… I’m back!

    Hello! Here comes a story that is hopefully going to help whoever will read it. Since I was a little girl I had several health problems and I actually suffer from about 6 chronic diseases, I already stopped counting them... 

At the age of 12 I underwent corrective spinal surgery because of scoliosis and 2 years ago I was diagnosed with an adrenal insufficiency. This put my life upside down. But I’ll skip this annoying part because this story isn’t about me. 

It’s about empowering the world not to be afraid of unexpected changes and about encouraging people to keep fighting for their dreams whatever life has reserved for them. Because if I’m finding my way back to life after losing almost everything at such a young age, YOU CAN AS WELL! Despite all, I’m a girl with a lot of faith, just waiting for a kiss of John Smith, you know who I mean…!? That handsome blond adventurer, Pocahontas lover…

  • Christa Bruning's story

    Introduction I'm Christa Bruning and I suffer from post-traumatic stress disorder and autism. I have been approved to get a service dog, but I need $25,000 for a service dog. I also suffer from chronic back pain. I have scoliosis, 7 fractures in 3 vertebrae and a herniated disc. I enjoy horseback riding and have a horse of my own. Please consider donating: https://sdwr.donordrive.com/index.cfm?fuseaction=donorDrive.personalCampaign&participantID=2620

  • Meet the people who turn physiotherapy into a playful game

    Using cutting-edge technology for turning common rehab equipment into smart and easy-to-use rehabilitation products The screen looks a little like the classic 1980's arcade game Frogger, in which an amphibian tries to cross a busy street. In this version, a red car has to maneuver through blue cars to reach an open lane — but instead of using buttons and a joystick, players move the car by raising a pole from one notch to the next. Sensors in each notch capture the motion and project the car’s progress on an iPad. This game is the initial offering from the startup PLAYWORK, and it helps strengthen the shoulders and upper back of people with disabilities or those recovering from an injury. In addition to the "Car-Race" game, the company has developed a variety of motion-driven games (e.g. "The Rabbit & Turtle challenge"), aiming to “game-ify” rehabilitation in order to relieve the tedium of staring at an exercise machine all day. PLAYWORK currently develops a bundle of smart devices for rehabilitation, based on common equipment and easy-to-use exercise applications. "PLAYBALL", another innovative portfolio product of PLAYWORK, is a smart physio-ball and exercise application that also uses gamification to revolutionize the way of conducting rehabilitative ball exercises. Using Big-Data technology and smart algorithms to make rehabilitation much more efficient Following the rise of the "Baby-Boom" effect in the USA, alongside with a constantly aging population worldwide, rehabilitation services have become a real burden on budgets and payers. By implementing PLAYWORK's intelligent rehab technology, training sessions are being monitored for every patient, herby supplying therapists with extensive data and information from a continuously growing data-base. Smart artificial intelligence algorithms are being processed to significantly improve their efficiency while simultaneously motivating patients to challenge themselves by providing real-time scores and feedback on their performance. Team of entrepreneurs who have personally experienced Rehab PLAYWORK is a "Digital-Health" startup led by a dynamic and experienced team of entrepreneurs. Mr. Yani Shachrur, CEO & Co-Founder, a serial entrepreneur, who had undergone rehabilitation for many years after suffering from a severe injury. Mr. Ohad Doron, VP R&D Product & Co-Founder, a former helicopter pilot, and technology expert, had also experienced long rehabilitation with few of his close family members. As part of the team's experts and advisors are also included Prof. Avital Fast who is an international expert in physical medicine, and Mr. Noam Gershony, who won the Paralympic wheelchair tennis gold medal in London, 2012. For further information, please contact: info@playwork.me Photo Description PLAYWORK Co. Founders, Mr. Yani Shachrur CEO, Mr. Ohad Doron VP R&D, Product, and Mr. Tomer Yannay CMO with Mr. Moshe Gaon, YOOCAN's CEO and Co-Founder who has recently joined PLAYWORK as an investor and advisory board member.

  • 10 Tips For A Happy "Autis"

    About My Life: My son, affectionately known as "Pootie," is 16, non-verbal, and lives with severe autism. I never dreamed after his diagnosis that my life would become so much happier because of his disability Pootie is in high school and communicates with a hybrid system (including PECS, an ACC device, gestures, and a few signs.) His favorite things in life are girls, Chex Mix, swinging, snuggling, Mardi-Gras beads, tennis racquets, frappuccinos, Kanye West, and being outside. I have developed an engaged Instagram following (@geegexoxo) and have become a positive resource for families of people with disabilities. I have been inspired by the lack of positive media surrounding people living with autism to write an inspirational memoir, Black Cloud Nine, for which I am currently seeking representation. (Disclaimer: My daughter coined the word "autis" when she was 6, and it has been used as a term of endearment ever since. It doesn't sound quite as harsh as "autistic"...and God knows we love a good nickname!) I am honored to share some of my top tips for living a happy life with autism. Tip #1: Make That Little Special One Look Fly They may not care about their style, but the rest of the world notices. My son is always dressed like the typical kids (maybe even better), and I never let the hygiene slide. He walks into school with his collars popped, the latest Adidas, hair gel, and cologne. By default, it has given him loads of confidence. Life is challenging enough for our kids; give them an advantage. Tip #2: Melatonin Supplements Are Your New Best Friend Many kids on the spectrum struggle with sleep disorders. This struggle is due to lower levels of Melatonin production. My son struggled to fall asleep every single night until we started Melatonin supplements. The hardest part about autism in the earlier years was dealing with this intense level of parenting while being exhausted. When he became older, our Psychiatrist added a sleeping pill to his regime to keep him asleep for the entire night. Get help. Talk to your doctor about the right dosage. Your life is crazy...at least get some sleep! Tip #3: Get That Child Out Of The House Nobody wants to be with their mommy 24/7...even your clingy special will grow to enjoy other caregivers. We all need to form bonds and learn from others, and God knows mama needs a break! Get your child involved in activities (outside of school) and find qualified sitters/respite care. My priority is getting help during the daytime on the weekends. I used to get Saturday night sitters, but by the time they showed up, I was exhausted and wanted to go to bed. This respite also keeps my son occupied seven days a week. Weekends feel ten times longer without some help! Tip #4: If You Constantly Tell Your Child No.... ...they will wind up resenting you, and you’ll lose your mind in the process. How depressing would it be if someone constantly told you that everything you were doing was wrong? My typical daughter is awful at algebra, but I don’t force her to work on equations 24/7. Structured environments and therapy goals are essential, but choose your battles and give that baby a break sometimes...and don’t forget to celebrate them for who they are and what they bring to the table. Tip #5: Haters Gonna Hate Relieve yourself from the worry of what others think; that’s a shift that you don’t need to work. Don’t dwell on what some judgemental jerk (who you’ll probably never see again,) thinks about your child acting a little nutty at Target. The most liberating gift that you can give yourself is learning to not care about other people's opinions. Tip #6: Sensory Sensation Convert your child’s bedroom into a sensory sensation! (Tailor this to your child’s needs and safety concerns). Fill the room with mini-trampolines, therapy balls, sensory toys, swings, and ENO hammocks. (If needed, you can un-clip the swings at night and remove the trampoline). Create a safe space free from breakables, (lamps, frames on the wall, even furniture) leaving only a bed and sensory delights that give them the sensory experiences that they crave. All the kids, even the teens, are jealous of my son's ballin' room. Tip #7: If You Are In Denial, Get Out Of It It’s only hurting your child. Your child needs services and support for the best possible outcome. It is what it is. Burying your head in the sand will not make it go away. People are born with autism and die with it...but there’s tremendous progress that will be made along the way. As crazy as it sounds, my life is 1,000 times happier since autism became a part of it. (Although, it took a minute to get to this place!) Acceptance is the key to happiness. Accept what you can’t change, then roll your sleeves up and do your best to help your child to succeed. It’s all that you can do...the rest is in God’s hands. Tip #8: #WorshipAndPraise My son, who is non-verbal and has severe autism, thinks that he’s some kind of movie star. He is loved exactly for who he is, not who I thought he was going to be. We have taught him how to love others by showering him with praise and affection. As a result, he’s affectionate, bossy, confident, and cocky as hell...which is extremely entertaining. Tip #9: Go Get A Milkshake It works EVERY TIME for de-escalating some crappy moods and tricky situations. Every child on the planet (with autism or not) is content with the vestibular movement of a car ride, listening to Migos, and drinking a Frappuccino. Your sanity is so worth three bucks. Tip #10: Track Down That Special None of this matters if your child goes missing. My son wears a tracker bracelet, which gives me major peace of mind. Verbal or non-verbal, any child with cognitive challenges needs this level of security. I am always amazed by how many children with autism do not wear these. You chip your dog, you alarm your home, why on earth would you not protect the most valuable thing in your life? BONUS TIP: Force Some Sibling Love I was always curious as to why children with autism bond with adults so much easier than other children. After researching, I found the reason: adults are the keepers of all good things. They have access to the comfort items, food, toys, and stim objects that our children would kill for. I decided to let my daughter be in charge of my son's reinforcers. If he cried, she was the one to deliver the pacifier or bottle. If he was hungry, she gave him the snack. If he wanted to go outside, she opened the door. It took a while, but he soon realized that she was valuable in his life. The relationship that he developed with his sister taught him how to love others and how to play. She was his best little teacher and best friend.

  • Accepting Our Disabilities

    Why is it important? Accepting your disability is important because usually, there is something that we are stuck with for life and cannot change. If we can't change them then we must learn to live with them. Accepting our reality doens't have to be as difficult as it seems. How do I accept my disability? A few ways that you can begin to accept who you are is to... 1. Connect with others who face the same challenges 2. Talk about it! Understand that you are different 3. Make jokes 4. Be confident 5. Ask for help when you need it 6. Use your resources 7. Take time for yourself if you need it. People with disabilities are more likely to have mental illnesses. 8. BE HAPPY! How I do it! In my house, both my sister and I have disabilities. Talking to her when I have an issue, or problem, always makes me feel better. We laugh and make jokes about our disabilities, and even create funny YouTube videos to educate and share about disabilities. Our moto is "Find the ability in your disability".

bottom of page