Search

My miracle baby Addison is an identical twin, you see when she was in the womb she and her twin sister shared the same sac, but unfortunately, her sister didn’t make it. That’s when things started getting complicated because her sister's wastes got into Addison's system resulting in Microcephaly, Cerebral Palsy, and Anencephaly. They said Addison would be a vegetable and let me know from the beginning that she would be a wheelchair user. They spoke about her as if she were a burden and told me that she would not look like other babies. Fast forward to now and Addison is my biggest blessing, she lights up my world and everyone else that knows her. She loves dancing, eating soul food, and getting all her cuddles. We have had a long journey full of surgeries and have overcome her having seizures. She surprises me every day and is a living miracle.

What is wrong with me? For nearly 10 years, I experienced debilitating, frightening, and painful symptoms that no doctor could explain. I saw countless specialists, all of whom knew nothing about what was happening to my body. Eventually, I was sent to a psychiatrist who diagnosed me with panic, anxiety, and agoraphobia. I knew what was happening to my body was beyond anxiety, but that is how I would be treated for the next 10 years. In 2020, my symptoms came crashing down on me and I was left bedridden, unable to do anything alone. I couldn’t drive, I couldn’t work, I couldn’t cook for my family, I couldn’t stand. My life felt like it had zero meaning and I felt completely hopeless. I finally found a doctor who took one look at me and told me this was not just anxiety and they were going to figure it out. For the first time, I felt like someone saw me as more than a patient with anxiety. After running dozens of tests, I was officially diagnosed with Lyme and co-infections, mold illness, postural orthostatic tachycardia syndrome, and a host of additional “chronic” illnesses. For one year I lived with this reality, began treatment, and I started to see some improvements. For one year, I got to see a glimpse of what “normal” life felt like again. For nearly 6 months, I have been lucky enough to be living again. My treatment is working, my mindset has changed, and my hope is restored. After 10+ years of feeling miserably empty, I finally feel like my life has meaning and worth again. My biggest, deepest, and best advice to give is that YOU know your body best. If you feel like something is wrong, keep searching for the answer. Please, don’t give up. And please remember, even if your life looks different than before, healing is possible.

Birth Edo was born in 2018, and immediately his parents Jessica and Gabriele recognized something was wrong. They told the medical staff that it was strange that the baby didn't cry and was still released. They told them "The mother is tired, and the baby is tired, don't worry". After the third time, the parents called for help, and almost an hour later someone finally came to give a real look at Edo and found him in a deep cardiac arrest. He took Edo and started to run toward the intensive care unit, but it was too late, he already got the most severe possible damage to his brain. Edo suffered from a pretty common condition, that is birth suffering, but usually medical staff is very attentive and gives a little slap to the child, and with some oxygen it normalizes. In our case instead, the misconduct of the staff let suffering persist and degrade causing very severe damage. They told us that our son would not pass the night. Life After 2 months in ICU here we are at home with a child unable to swallow even his own saliva, with a tetraparesis, 4-5 daily vomiting episode (and subsequent inhalation of gastric material, resuscitation maneuvers done at home by us parents - day and night). But we believe in him and start a tough rehab program, fighting for each little improvement. We work with Edo every day, on weekends, on Christmas, every day, no matter what. And we are seeing great improvement in him (follow us on Instagram @associazione_espera to see what he is able to do now!). Espera These are tough times. Sleep is a mirage (we cannot sleep more than 2 hours per time because we have to perform bronchoaspiration on Edo to avoid him suffocating himself with his own saliva). Days are without a break, sometimes we do not have time to eat or to have a shower. It is simply not possible to really care for a severely disabled child without help. So we decided to seek out Espera, a non-profit to get the help we need and also give it to other families in our same situation. Espera uses its network of professional pediatric nurses, physiotherapists, speech therapists, neuropsychiatrists and so on to help these families at home. To help them give their little children a chance to improve. A chance to be happy, surrounded with love, and live a full life.

When it all started I was diagnosed with juvenile idiopathic arthritis at 18 months, Crohn's at 3 years old, and after that, uveitis. I never really found relief, and remember most of my childhood in the hospital. I was always doing something scary like pokes or procedures. I had a mediport and a g-tube and once relied on tpn. I eventually had an ileostomy placed because I never found relief and my Crohn's got very life-threatening. I was little, I needed to grow. and that’s what the ostomy gave me- the chance to grow and be healthy! My ostomy was made permanent a few years later after I formed more fistulas. My Crohn's has been at bay ever since! It's so relieving to not have to deal with that in my teen years, as I have always had lots going on with my arthritis. Fake it till you make it I never got full relief from my arthritis either, as it worsened into my teen years, I got a wheelchair. I relied on it for a while as my arthritis got so bad I couldn’t touch my feet to the floor, or roll over in bed even. It was frustrating. I relied on steroids to get me through, for years. One time I got an infusion of 1000 mg of steroids but that didn’t work either, joint aspirations and steroids into my joints barely worked. I was used to limping and being stiff at this point. Until I tried Actemra infusions, at first they didn’t work but suddenly my numbers normalized. From my ESR being in the hundreds to now no signs of active inflammation! Putting the “chronic” in chronic illness I'm so thankful those parts of me are under control. But it's hard to be thankful when I’m still suffering in other ways. Over the years I developed POTS which makes it hard for me to do anything without my heart rate rising and making me just want to drop to the floor. Not to mention the brain fog and fatigue. It makes school so difficult. Osteoporosis and adrenal insufficiency are just a few more of my struggles because of all the steroids I was on. Now I’m “medically complex” and my doctors like to give up on me when I present something new. My journey is far from over I always have been known for being positive throughout it all. But that doesn’t mean my struggles are any less. There’s something to be gained from my experiences, whether it’s me or another person that benefits. I have made amazing friends in the chronic illness community and I strive to educate others on how invisible these diseases may seem. It's so important to know that there’s much more to illness than just a name. One day I aspire to work in the medical field to make a true difference for kids like me.

My story It took me a while to accept the fact that I need a mobility aid. I didn't want to have to use one. I hate it when all the attention is on me... I try my best to stay hidden in the background but with mobility aids, that's just not possible. I kept thinking that mobility aids were just for the elderly and wheelchairs are for people who literally can't walk at all. Then I found the chronic illness community on Instagram and saw all of these people with my conditions using mobility aids. This gave me the courage to get an aid for myself. The next step was to actually use it in public... That was just as hard as accepting I needed one. These horrible thoughts kept rushing through my mind... 'What will people think?' 'They're going to think I'm overreacting!' 'They're going to wonder why I'm using a wheelchair.' 'They're going to ask all these questions!!' 'I don't want people feeling sorry for me!' After seeing more people my age using mobility aids for their chronic illnesses, I pushed through my fears and decided to give it a go... I couldn't believe it. My illness suddenly became visible! Everyone could see that I have a disability. For once people could see that I am struggling. People were extra nice to me. They would let me in front of them in line, hold the door open and make way for me. Very quickly I began to wonder whether that was a good thing or not. People would avoid me and try not to look at me. Some even talked to me like I'm a baby, like being in a wheelchair makes me have a low IQ. One time a lady and I got to talking about how I've lost 23kg in the past year and a bit... She then asked me how I lost so much weight, looking at my chair as if to say how is that even possible?! So... there are positives & negatives but at the end of the day, if an aid will make your life easier then so what? It took quite a while for me to adjust to using an aid in public. Up until yesterday, I couldn't stop thinking about what others thought. It was horrible but I kept pushing through and I'm so glad it did! I can now go out in my chair and just be me. My chair is now part of me and it gives me freedom. ❤

Don’t be afraid of being authentically you!!! My name is Nina and I’m a Spanish 30-year-old woman born with a mild congenital CP. Although CP has never stopped me from doing everything I wanted, it took me 28 years to fully accept my disability and my account has helped me immensely. I finally feel free to be authentically me without being afraid of not being perfect or hiding my disability. Through my account @authentically_nina I try to show my authentic self, my day-to-day life with CP talking about my struggles but also about everything I can do. Maybe not the same way as others, but in my way. I encourage people to be authentic and try to break societal stigmas around CP or disabilities. I’m trying to create awareness and give visibility to something that is not as visible in my country, a society where there is still a lot of hiding and stigmas and a lot of work to do in terms of equality.

Riley Grace Riley’s story starts April 23, 2019. We had opted to get the 3 month scan and NIPT test with our 3rd pregnancy just for the extra ultrasound. The tech brought in the Maternal Fetal Medicine Doctor and he pointed out that there was an increased nuchal translucency measurement and that it was common with different trisomies, he suggested we have the materNit21 test to see which specific trisomy we were at high risk’ for. We opted for it. I got the call a few days later that the baby was at high ‘risk’ for trisomy 21, otherwise known as Down Syndrome. I'm not going to lie, it took my breath away. I cried for what I thought I was losing and I cried because of the way the news was delivered from the genetic counselor. She delivered the news as if it was a terribly awful condition. Then of course I had to go back to Maternal Fetal Medicine where the specialist suggested I get an amnio or a CVS in case I would like to know 100% if I had plans to terminate. That was obviously not an option for us. We said we will have this baby no matter what, it hurt me that they would even suggest otherwise. I just couldn’t fathom their reasoning.. why? I have a teenage nephew with Down syndrome. What if my sister in law aborted him? HOW was he not worthy of life? HOW is my baby not worthy of life? The rest of my pregnancy was very stressful, to say the least. I had terrible morning sickness, high blood pressure and a high risk pregnancy. I had 2 fetal echocardiograms which were inconclusive. Fast forward to October 10, 2019 (my 35th Birthday) I had an Ultrasound that day. The OB told me I had an umbilical vein varix and that I had to be induced ASAP because I was at risk for stillbirth. October 11, 2019 at 12:15 am, Miss Riley came into this world!! She was just perfect. She cried right away but then her color started to become gray, so they took her and gave her oxygen. We had a week stay in the NICU and also a diagnosis of an AVSD heart defect that would need surgery. They told me also that Riley had a few traits of Trisomy 21, I told them I was aware there was a high chance of that early in my pregnancy and that it didn’t matter, she was the most perfect baby in the world. February 2020, Riley’s heart got the repair it needed, it had been a bumpy road but since then we are starting to really see the real Riley. She is a force to be reckoned with. I truly believe the world will know her name. Down Syndrome, heart disease and being born a month early has NOT held Riley back, she is meeting her milestones and wants to be a big kid like her big brother and big sister! It is truly amazing to see how strong Riley is, despite her low muscle tone she is rocking PT, doing baby signs and getting into everything like any toddler should! I do know we will have some challenges ahead, but I also do know that Riley is a rockstar and she will overcome them all! Down Syndrome isn’t something to be feared, it is something to be celebrated! Riley has opened up a whole new world for our family! Riley’s smile can warm even the coldest heart, her determination is nothing short of extraordinary. Her extra chromosome makes her who she is! She IS Riley, she HAS Down Syndrome.

Let the naysayers be your motivation Growing up, I was told college would never be a good fit for me due to my disability. My reading and writing scores were far below average. However, going to college was my dream. It broke my heart at my IEP meetings when my teachers told me that college was not an option for me. My classmates laughed at me when I talked about college. Despite the naysayers, I got accepted and graduated with my Bachelor's in Social Work. The lack of encouragement did not end there. I then decided that I wanted to get a PhD in order to be a professor to help other students who have had similar experiences. I was laughed at again. Luckily, doubt is my biggest motivator. After several rejection letters, I finally got accepted into a PhD program on a full ride scholarship. I graduated in 2019 and my new name is "Dr." I am a professor at Fayetteville State University. I now have the amazing opportunity to advocate for students who have had similar experiences as I have.

My Scoliosis Story I was born with a spinal condition called Scoliosis. The type I have is Kyphoscoliosis. It is a curve of the spine and can affect people in other ways as well. I was tube fed when I was a baby. I wore a Scoliosis brace for a while when I was at school. After a while, I didn't need to wear it anymore. Years ago, a doctor said it would be too dangerous for me to have surgery so I didn't have it. I am short in stature for my age because of Scoliosis. I can walk but when I go out I use a wheelchair (one that someone pushes me in) because I get tired of walking. Every 4 or 8 months, (depending on if my results are good) I usually have lung function appointments at a hospital, I am not going to hospital appointments at the moment, because of the Coronavirus, but I have had a telephone appointment. My makeup Makeup became my hobby in 2018 and that is when I started sharing my makeup looks on social media. There are things I need to improve on in makeup, but I always try my best to do my makeup looks well!

Getting into my Cadillac Hi, my name is Kathy. Doing my daily dance in my wheelchair. Sometimes it’s a tedious process, but ultimately I found the best and fastest way how to get myself and my wheelchair into my Cadillac :) Check it out, step by step, I hope it helps you out! Have a great day!

My struggle Hey, humans! I'm Amy and although my story is long and complicated, I don't have a diagnosis despite literally thousands of tests and dozens of doctors, so I'm just living with my condition and taking it day-by-day. I was an EMT for several years and was in the middle of paramedic school when my symptoms hit. The closest condition to mine is perhaps a form of cerebellar ataxia. Basically I don't have any balance or coordination and I have slurred speech. It makes things difficult, but I've found that with good people, mobility aids, and patience with myself, things are much easier. Also, I had massive struggles with my mental health and that was probably the hardest thing. I will most likely have ups and downs throughout my life, but I am better equipped to deal with them now. I graduated from paramedic school and got certified, then I worked as an instructor for two different paramedic programs, and now I'm learning video editing! I want to focus on having self-fulfillment and also helping build an accessible world for everyone. 😊

Loving embodiment with many wellness tools I enjoy riding an adult trike, ecstatic dance, writing daily, and making visual art. My diagnoses include schizoaffective disorder and anxiety, and I'm a lifelong hearer of voices. I stay as grounded as I can by feeling my feelings, and I love embodiment with physical movements like qigong, yoga, and dance. Mental health is something I take seriously by having many tools in my toolbox, not relying on one or two healing modalities for my well-being. As a person with psychiatric diagnoses and a larger body, I can feel dismissed by doctors and other medical providers. Disability justice is one of my favorite things to write about. I love how building community and caring for myself and others can help me feel strong. Maintaining my personal power is central to my well-being, not handing over power to anyone else. I feel glad I've found many ways of being myself and doing the work I'm on earth to do. I'm on earth to learn, speak my truth, feel pleasure and connect to others with love. Please see my journey at https://www.listeningtothenoiseuntilitmakessense.com or @xtrikeslutsx