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Thirty… It’s a big milestone. It’s a birthday many young adults in their 20s dread, while others plan a big party or night out to celebrate or embrace this “big” milestone. My 30th birthday was about a month ago at the time of writing. This birthday turned out much different than I anticipated. Although I personally never envisioned throwing a big 30th birthday party, I still envisioned celebrating with friends and family over dinner and/or spending an afternoon doing an activity I enjoy. However, my life took an unexpected turn months after my 27th birthday. I had a massive stroke due to numerous cervical dissections. I spent my days simply fighting for my life and attempting to regain the basic human functions including walking, talking, using the bathroom, etc. As the first two years passed, I did manage to regain a fair amount of my independence, but those years brought about many changes in my life. Plenty of the changes were expected because I was indeed recovering from a massive stroke. I was also navigating my way through many unexpected twists and turns. I was presented with more than my fair share of obstacles and decisions that no 28 or 29-year-old should face. Needless to say, my life was far different from those of many other individuals in their late 20s. Weeks Leading Up To My 30th Birthday... A few weeks prior to March — the month of my birthday — the overwhelming and all-encompassing stress which is now “the norm” escalated. This increase in stress was due to numerous factors, but I was well aware that one contributing aspect was my birthday slowly approaching. I’ve had two and a half years of prior experience in the early “recovery” stage; for a multitude of reasons, birthdays and holidays post-stroke are uniquely more painful and emotionally difficult to endure. Those days no longer feel like celebratory occasions. But this birthday, as well as the weeks before and after, were far worse than what I had previously experienced. Here are three reasons why turning 30 has been utterly heart-wrenching and painstakingly more difficult: #1 1. The reality that my life was not supposed to look like this at 30. I really am only 30 years old. It has been less than three years since my stroke, yet it feels like an eternity. I feel much older than 30. Physically, l feel 80. I have literally been at death’s door and because of that, I’m much wiser than most 30-year-olds. I have endured more pain, suffering, bad news and heartbreak than one should experience in a lifetime. Yet again, I’m only 30. The realization I still have basically my entire life ahead of me is too overwhelming. I cannot bear the thought of facing any more pain and hardship in my life. #2 2. I feel like I was “robbed” of my 20s. Thirty is considered a big birthday because it is truly a milestone in one’s life. The transition from 20s to 30s is saying goodbye to those early years of adulthood when you’re starting to discover who you are and welcoming the more mature aspects such as marriage, starting a family and accomplishing professional goals in one’s career. I feel like I bypassed this process entirely. My 20s consisted of eight surgeries, a handful of cervical dissections and a massive stroke to top it off. My 20s were consumed by doctor appointments, injections, needle pokes, procedures, medications, imaging such as x-rays, CTs, MRIs, hospital stays and more hours of rehabilitation than I could ever count. I had no time to discover who I am outside this medical hell I was living. I felt forced to “grow up” overnight. I missed out on the fun, adventures and mistakes one should experience and learn from in their 20s. #3 3. I have only now begun grieving the majority of my experiences. Trust me… I’ve had many days over the last 10-plus years where I was frustrated, upset, angry and so on about the unfortunate things happening in my life. However, I typically tried to look at the upside and positive in my life and tell myself better days were ahead. I managed to graduate pharmacy school despite much pain and three surgeries during just the rigorous graduate school portion, for example. That definitely was not easy, but again I pushed forward and celebrated little victories in the face of much adversity. When I had my stroke, it felt like my system went into overdrive. I was in the hospital for months, then in outpatient day-long intensive rehabilitation for one year. I was presented with never-ending obstacles and encounters I had no choice in because my life was at risk. I’ve lived the countless and immensely treacherous days full of more tears than one could imagine. I was running on a nearly empty tank of gas for years. Given this, I could not realistically process the true intensity of the events that were occurring; I was merely trying to scrape by and survive. Now, years later, I am slowly beginning to realize, understand and cope with what I have endured, all while still living with the suffering I’m still experiencing in the present day… and it’s a lot! My Wish... At first, these three reasons were not easily identifiable. The reasons gradually became evident over the weeks both before and after my 30th birthday. Days after days, I would stare at unopened birthday cards, unable to face the reality and heart-shattering pain of my 30th birthday. On each birthday in my 20s, I wished the next year would bring less pain and adversity. However, I was often greeted by the opposite. I still have that same wish; However, I hope more that the next year or decade brings acceptance, new healing and also helps me realize the silver lining of the adversity I have encountered thus far in life. For Others... Birthdays normally have a happy connotation; I hope sharing my unfathomable pain brought on by a “simple” birthday comforts others with chronic illnesses, pain, trauma, and so on — others who have also experienced similar feelings or difficulties with birthdays or holidays, for example. For those who have not encountered unreal pain due to a birthday or “happy” life event, I hope to raise awareness that these feelings and emotions can and do occur for others. Life is precious. There are no guarantees. Be thankful when a seemingly “happy” day goes as planned or expected. Be aware that someone in the world is likely, simultaneously experiencing immense, soul-crushing pain, suffering or sadness on what should also be a “happy” day in their life.

From the start Rory and Alfie were once the same person. Not similar, nor alike, not conjoined, but the same person. They were one tiny ball of cells that then split to make two babies, and as a result, we have identical twins. To share that is something that blows my mind, and makes me think they have a bond that I can never understand. People often talk about a ‘twin instinct’ or link, and I never believed it until I had them. Separated When they were born, it was the first time they had been apart, quite literally. Prior to this, they were joined by a placenta, a shared blood and food source. So I cannot begin to imagine how terrifying it was to suddenly be apart. I remember the first times they were put in incubators and cribs together and their heartbeats would go into synchronisation, their temperature would be better and they would be more settled. I knew from then that they would be best friends, no matter what. Unbreakable So much has happened since they were separated, yet nothing has broken the bond they have. Not only did they spend weeks where they were apart at night after Rory was discharged and Alfie remained in special care, but with hospital admissions and surgeries, they have often gone several days without seeing each other. When they are reunited it breaks my heart. Not with sadness, but with complete and utter love. Seeing the love they have for each other is just completely overwhelming. They couldn’t be much more identical, yet are entirely different. Obviously Alfie is physically disabled, and so cannot run around with Rory, but he never lets that stop him from joining in. He gives as good as he gets and loves playing with Rory. NULL And their personalities couldn’t be more different. Rory is so dramatic, and loves to be the centre of attention. Everything is exaggerated and the smallest of things cause epic meltdowns. He loves to cuddle and is a little chatterbox. Alfie on the other hand is always rough and ready. He loves being boisterous and crashing into things as he rolls. I’ve lost count of the amount of times I’ve rushed to Alfie, terrified he has hurt himself, only for him to be annoyed at me interrupts play! Though, like Rory he loves attention and is always a flirt! Forever It’s these reasons that make me know my boys will be there for each other no matter what. They are like chalk and cheese, but are the best of friends. Their love for each other is unconditional (unless chocolate is involved), after all, they were one being to begin with.

What? Hi! My name is Anisha Yellamraju and I am 16 years old. I recently started a blog to raise awareness of rare disorders. In this blog, I will interview families that have children with rare disorders and write a blog post about them. I encourage you all to read this blog and learn more about children and people that live in this world that have disorders you have probably never heard of. I genuinely hope you all enjoy this blog and spread the word! Why? Now that you know what the blog is about, you're probably wondering why I am doing this. The reason for me starting this blog is to give a voice to those who don’t have a collective voice, meaning I want to be the voice for all those who might not have the opportunity to be a voice for themselves. Having a child with a rare disorder and not knowing anything about it, because it’s practically unknown to the rest of the world is extremely hard. It takes a lot of courage to take care of a child that may have this rare disorder because these parents don’t always have the chance to meet someone else who may have this disorder or families who have children with it. I would like this blog to inform families who may have just given birth to a child with any of these rare disorders and let them know that they’re not alone. I also would like this blog to raise awareness for these rare disorders because believe it or not, there are a lot more disorders than just down syndrome or diabetes. Conclusion I encourage you all to read this blog and learn more about children and people that live in this world that have disorders you have probably never heard of. I genuinely hope you all enjoy this blog and spread the word! Blog Address Make sure to check out the blog @ www.theraredisorderjournal.com. Thank you, Anisha Yellamraju

Trauma Met Me Early Tragedy met me at a young age, 5 years old, to be exact. I’m a victim and a survivor of childhood sexual abuse at the hands of three of my mother’s brothers and the youth pastor at church. I grew up struggling mentally, trying to forget about the abuse. The childhood sexual abuse causes me to have a low-self-esteem with no self-confidence and growing up not knowing my self-worth. I dropped out of high school and gave birth to seven children before I reached my late twenties. But in my thirties, I went back to school trying to do something good with my life. I taught myself how to bake so that I could start my business. Even though childhood sexual mentally cripples you, God put a fight in me that wouldn’t allow me to give up. Lost My Legs to Recover My Life Sexual Abuse took my innocence, destroyed my self-esteem, and stained my trust. As a result, I grew up looking for love in all the wrong people, trying to be accepted while being rejected. Struggled very hard while growing up, but God knew the path I would take and the mistakes I would make along the way. On May 29, 2007, I recovered the life that was stolen from me through a tragic car accident. While getting my flat tire fixed on the highway, a reckless driver hit me and torn both of my legs off of my body instantly. The accident was meant to kill me, but God had another plan that I didn't understand. After losing my legs, God gave me everything back that sexual abuse took away from me as a child. When I had legs I didn't like myself, but after losing my legs I started to love myself. You would have thought that my confidence level would have been low knowing that my legs were gone, but God gave me confidence that inspires people every day. Struggles met me at an early age and cause me a lot of pain, but if I had to do it all over again, I wouldn't change a thing. God showed me I was just like a diamond. You can scatch a diamond together and it won't break. I suffered loss and endured trauma, but it still didn’t break me. My life seemed hard to fix to me, but it wasn’t too hard for God. I lose my legs to recover the life that was stolen from me. Directed My Path to Purpose Even though I went through sexual abuse, rape, shame, and losing my legs, God can still use me and get the glory out of my life. Now that I look back over my life, God was in control all the time. He persevered me through my struggles and direct my path to purpose. I can tell you today that I received my high school diploma, pursued my bakery vision, which is called, Especially Sweet Homemade Pound Cakes. I started college in 2009, recorded a gospel CD, title My Testimony, and currently working a support group for women titled Valuable Gems. And Last but not least my I published a book entitled From Tragedy to Triumph, “Loss My Legs To Recover My Life. It was no goodness of my own that I accomplished my goals, but God gave me the strength, confidence and saw me through. One song on my Cd said “He turned my mourning into dancing. He turned my sorrow into joy. Remember, God can love you so until He will make you forget about struggles.

My Arm I have a Venous Vascular Malformation, which is a malformation of veins in my arm also called Klippel Trenaunay. After having nineteen sclerotherapy treatments and five MRIs, I realized that having a strong background in medicine encompasses my love of helping others. My Venous Vascular Malformation affects me as a person since it makes me unique and has a great impact on my personality. No birthmark will ever look identical just like no two people will ever be the same as each other. People usually see my arm and freak out just because it's not "normal" like everyone else's. No one should be judged by the way they look, however most children and adults still do. My arm is blue, purple and green in some spots, is visually bigger than my other arm and I also have four keloids that are burned from radiation. I fought through hard times and ignorant comments that shaped me into the person I am now. I have a lot of confidence and I am not scared to talk in front of others. Impact on Childhood Often, my arm hurts because of usage, movement, or hormones, since the blood does not flow correctly in my arm. Therefore, I could not play sports because of my Venous Vascular Malformation because my arm is swollen and hurts a lot. For this reason, I decided to do dance, which was not any easier. After my procedures, I had to take two weeks off of dance which caused the teachers to think I was falling behind. The teachers did not understand that I physically could not dance, and they still dropped me down a level. Additionally, one of my dance teachers told me that I was too fat to be in the dance class. She told me that I had to lose weight in order to be with my friends. This situation will never be forgotten because I was only 12 years old. I was often insecure about how I looked after that moment. I never realized that I was "bigger" than my friends. No one knew how much this affected my life. Spreading Birthmark Awareness Recently, I have began accepting myself for who I am. I am different and unique. Also, I hope to spread awareness about different types of birthmarks and how it affects my life. On my instagram account, I write about stories or situations that have occured with my Venous Vascular Malformation. Everyone in today's society tries to be perfect because models and other social media influencers are "perfect", but I am glad to be different. In the future, I hope people become more accepting of all body types and disabilities.

The pain One year ago, I passed out and went to a doctor who said I had a tumor. A few weeks later, I felt a headache and pain in my hands, so I went to a new doctor and he laughed and said I didn't have a tumor and surgery wouldn't help. I didn't accept that and went to another doctor who said I should have surgery because if I didn't, I would die in a few weeks. Surgery would ensure a 20% chance to survive. When I went back home, I stayed in my room the whole night and thought about the people I loved. If these were going to be my last days, thinking of them made me decide to fight with all my whole power and choose to live. I knew how to handle the pain from hard times in my childhood. Surgery that saved my life I found another doctor who was the best in my country. He said the same words and introduced me to another doctor in my city. I went to that doctor immediately and found he was my reason for hope. God gave me a way to find the best person for this surgery; he said their words but also said: "you can fight and pass these hard times with this power." Everyone in the hospital told him not to perform surgery on me, but he and his team gave me hope and constantly asked me to stay strong. "We need your power," I promised them that I would use all my power. My surgery was about 5 hours. I remember the moments before the surgery someone came to my doctor and said don't do this, she won't stay alive....but we didn't care. I recovered in 45 min, no one believed this and they brought me to the ICU where I had to use a ventilator to breathe and I couldn't talk or eat. I just spoke with my eyes and hands. The first day my doctor came to me and looked at my eyes and held my hands and said " thanks for fighting and only you could do this. Your surgery was so hard and dangerous but I did it in the best way." I could see his worry about me as though I was part of his family. He called ICU every couple hours to check up on me. Recovering from surgery The moment I'm writing this, I'm recovering from surgery and thinking about my time in the hospital and the people who stayed with me even they were so far. I found out who really loved me and who didn't. I fight so hard to get better even if the universe says I can't recover. I fight for my self and the people I love. Their words, hopes, and love will be in mind forever. I did it because God is with me because I am a part of God. I'm so glad that I didn't give up. Everyone has the power to fight and win because we are a part of big power. This pain taught me to live and be happy, although I was happy, I should be happier and do whatever I didn't do and go for my goals in my life that I fight for. 🤘🏻

My story with Lymphatic Malformation I was born with a Lymphatic Malformation. (also known as Cystic Hygroma). LM only affects 1 in every 4000 births. Lymphatic Malformations are rare non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the Lymphatic system. I have both Macrocystis & Microcystic Malformations. (Mostly micro which unfortunately means my malformation doesn’t respond as well to treatments and options are limited). Macrocytic Malformations are large, soft, smooth clear masses under normal or bluish skin. Microcystic Malformations are presented as small raised lesions containing clear fluid. There is no known cause for this and it is not genetic. Raising awareness about Lymphatic Malformation I was diagnosed at my moms 22 weeks ultrasound. I was born unexpectedly at 32 weeks. I spent 5 months to the date in the NICU and had a feeding tube and tracheostomy until I was 12. Since birth, I have had 55+ surgeries and procedures and have spent the majority of my life in doctors offices and hospitals. I have the malformation primarily in my face, tongue, and airway. They bleed, flare and can be very painful. I used to feel so insecure about how I looked due to the Malformation but I now embrace my uniqueness. Kids could be mean and adults even meaner but it only made me want to advocate and educate even stronger. There is no cure yet but until there is, I strive to educate and bring awareness to those about LM.

Muscular Dystrophy Limb Girdle Diagnosis My name is Maria and I was diagnosed with Muscular Dystrophy at the age of nineteen whilst studying at university. This is a muscle-wasting disease in which science has yet to find a cure. My type is Limb-Girdle and it affects the pelvic area, legs arms, and the heart muscle. Movement difficulties with Muscular Dystrophy As Limb-Girdle is a deteriorating disease over the past ten years I have noticed my body rapidly slowing down. If I fall I am unable to rise from the floor, I am no longer able to raise my arms due to the muscles wasting away around my Scapular bones, and I can only walk very short distance as my leg muscles are unable to sustain long distances and I get out of breath. Recently I have started to use a wheelchair if I am traveling long distances. To maintain my strength for as long as I can I go swimming and go to regular physio in which I enjoy. My Career With having this muscle wasting disease I did not and will not stop it from me having my career I always dreamed about. I finished out University and I work for a construction business for the past ten years and I love it. People have it in their heads that people with disabilities are incapable of working this is far from the truth with reasonable adjustments we are more than ABLE. Social life and fashion I have a great social life and have the best people around to support me I believe that having good people around you when battling illness is really half the battle, it's good to get out and talk and never be ashamed of who you are. This is your journey and only you can live it how you want it, so make it a good one. I also love fashion. I constantly shop around for ideas. I am restricted to certain clothing and obviously shoes and I do believe that people with disabilities are overlooked in the fashion industry and there should be more clothing accessible for you. People with disabilities matter. My Family I am married and have two beautiful boys age two and six. I met my Husband when I was sixteen years of age and he has stood by me. He always says "we might not go fast but we go far". When I was diagnosed I was told the odds were against me to be able to have children. I beat those odds because I refused to believe it I always knew I would have my own family and no disability was getting in the way of that. I now stand proud as a mother with a disability to the most amazing little boys. Having a Disability When I was first diagnosed and anyone mentioned the word disability, I just shut them down. I couldn't accept it. I felt I no longer fit in with my friends as I was unable to do the same activities. Now, disability is just a word to me. It will never get in the way of what I want to do in life. If anything it has made me the person I am today, it has made me stronger and a fighter. People ask me how I do it, how I keep positive knowing that things don't get better. My response is I absolutely love life. I want my journey in life to be fun and live the way I want to. I don't want to waste time dwelling on the negatives instead I search for the positive. I want to be able to say I never give up fighting for life, I lived it the best way I knew how.

The Power of Influencers These days you can’t pick up a laptop, smartphone or tablet without coming across an influencer. Usually, someone promoting a product or service, in return for a fee, freebies or so-called ‘exposure’. It’s no surprise that ambassadors are everywhere – it’s the most effective way for a brand to promote their product, by working with someone who their target audience can relate to, creating real content that isn’t a flashy ad. But what about the bloggers and influencers who go deeper than that, who offer a real wealth of knowledge to their readers and followers? Disabled Travel Blogger I’m a disabled travel blogger, and I think what we give to our readers is pretty unique. I started blogging in 2010, before brand ambassadors and influencers were a thing, when you could get the occasional hosted trip but there was no such thing as being paid to create content. The reason I started blogging was to share my passion for travel with the rest of the world, and to show that accessible travel is possible, and can be made easier with the right information. Why do I blog? Almost a decade later, that’s still the reason why I blog. Sure, the hosted trips are nice, but the best feeling in the world is someone telling you that they’ve had the confidence to book a trip, as a disabled person, because they’ve read your latest blog post. Traveling with a disabiliy A disabled person who wants to travel needs a huge amount of detailed, accurate information before they can even decide on their destination. That’s why disabled travel bloggers, as well as telling you why you should go somewhere, importantly we tell you how – what the accessible transport options are, how the hotel has adapted to accommodate all guests, where the best places to visit in a wheelchair are. All of this accompanied by high-quality photography and film, because there is no substitute for seeing it with your own eyes when it comes to accessibility. "I want to inspire others to travel" ‘Inspirational’ is a word that is overused in disability circles, but I do want to inspire. Not for living my life, not for working hard despite the barriers I face, but to inspire others to travel, no matter what their impairment or disability. To know that although accessible travel can be challenging, stressful, and sometimes disastrous, it can also be freeing, empowering, and absolutely wonderful. accessible tourism market I urge travel brands, accommodation providers and places to visit to reach out to disabled travel bloggers and work with us to promote their offerings. The accessible tourism market is worth an estimated 3.5 billion pounds in the UK alone, a so-called ‘purple pound’ which no business can afford to ignore.

Erez Celebrates His 11th Birthday Our amazing happy boy, Erez, celebrated his 11th birthday in July. Erez was born with a rare condition of Giant Congenital Nevi & Neurocutaneous Melanosis, Scoliosis & more. Erez does not stop sharing his smiles and positivity with the world. He celebrated his birthday in our house with friends from his regular and special school, family friends, and family. Everyone had a blast celebrating this event. A television reporter was even there to show the event nationally following the release of Erez's mom's new novel "The Flower Quilt," which tells her & Erez's story in an empowering and direct way. The Celebration Continues in Tel Aviv Following our party at home, we continued the celebration at the Tel Aviv Port. We rode the merry-go-round, ate by the seaside, and took a family photo next to the iconic "I Love Tel Aviv" sign. We want to share the happiness of Erez, and our approach of looking at the glass half full. We do the best we can in supporting each other as a family and making Erez smile as it helps us smile too. Happy birthday, Erez! We love you and the world loves you too, you show us every day that yoocandoanything!

My Story: life with an Invisible Illness When I was 15, I got a bacterial infection in my ear and skull. After eight weeks of IV antibiotics, my medical team discovered that I had suffered ototoxicity -- a fancy word for poison -- and was left without a vestibular (balance) system with no hope for a cure, I had to relearn how to walk, track when I read and write in a straight line. My vision now bounces constantly -- kind of like an amusement park ride. This invisible disability is known as oscillopsia. What a tongue-twister, right? Since then, I've been diagnosed with chronic, daily migraine and recovered from 14 surgeries. In a plot twist, I was also recently diagnosed with SUNCT Syndrome -- a rare neurological condition which causes me to have up to 200 mini, electrical-like headaches each day. It's about as fun as it sounds. We Are Worthy Living with an invisible disability and two chronic pain syndromes has completely restructured my life. I've learned how to prioritize rest and be nimble with my time. I don't think anyone is ever prepared for a chronically ill life -- we don't choose it, it chooses us. But a constant roulette wheel of illness has shown me the depths of living with intent. Life is messy and hard and insurmountably tough sometimes. But we only get one shot at it, and being sick doesn't disqualify me (or you!) from the game. We're worthy of joy and goodness and brightness.

It was just a normal day In June of 2018, I suffered a stroke causing paralysis on my right side. I have since regained most of my arm function back but my leg has had no improvement. It was just a normal day like any other. I had spent the day at a space museum with my husband. We were in the car on the way home and I noticed that my fingers and toes on my right side were tingling. It got worse and I quickly began to lose sensation and movement. We both knew the signs of a stroke and immediately rushed to the hospital. I Couldn't Walk Once I arrived at the hospital, I was unable to walk so my husband brought me inside with one of the hospital's wheelchairs. We went to the front desk, quickly explained what was happening, and they checked me in right away. They had taken my vitals, and blood was drawn. There was no additional testing done. "It's just anxiety" I am a young adult under the age of 25. The doctor entered my room and I was (understandably) crying. The doctor took one look at my chart, saw my age, then immediately diagnosed what was happening as a panic attack and told me that the paralysis was from anxiety. The doctor told me that my body would return back to normal within 24 hours, did no treatment whatsoever and discharged me. My husband mentioned to the doctor that we thought this was a stroke and the doctor said I was way too young to have one. We were of course outraged. I Missed The Time Window For Treatment After being discharged from that first hospital, we immediately went to a different hospital. Because so much time was wasted by the first hospital, I had been having symptoms for several hours. By the time we arrived at the second hospital, I had missed the time window for treatment and had brain damage. An MRI or proper testing/treatment was never done. I've been using a wheelchair ever since and have been working hard to bring movement back to my leg. So far every medical professional I've told my story to is baffled by the first ER staff's actions. They Lied On My Medical Records I wanted to file legal action against the first hospital but was put at a pause when I recieved my records from my hospital visit. Two individuals untruthfully wrote that I was ambulatory (walking) both when I entered and left. They lied. Why would they do such a thing? I am currently in the process of resolving this issue and having those incorrect records corrected. Strokes Can Happen at ANY age I now have several medical issues as a result of the stroke and have had countless hospital stays. This should never happen to anyone. The doctor who saw me was not only arrogant, but completely incorrect. I now educate as many people as possible about the fact that strokes can happen at ANY age.