Amanda Henderson

@amandahenderson | contributor
The Mighty is a great resource for information and camaraderie in the rare disease communities. It helps me feel a little less solitary and better informed as I navigate the uncertain waters of rare disease. I feel the best way to defeat our enemies (diseases), so to speak, is to arm ourselves with wisdom, knowledge and community- there is strength in numbers, and knowledge is power. As I spend most of my time at home with my dogs, it helps to know that we are all working together for a common cause, even from our sofas.

Coping With the Effects of Ehlers-Danlos Syndrome on the Whole Body

Seeing a bird perched perilously upon a high wire seems reminiscent of living with chronic illness, which is a human health condition or disease that is persistent or otherwise long-lasting in its effects. I’ve thought about what life can be like for the chronic illness community. Some days, chronic illness can seem to take up the entirety of a room, and accomplishing anything outside of the difficulties of the illness may feel impossible. Other days, you may be able to hold chronic illness in your hand, place it in your pocket, and carry on as you try to create enough good memories to get you through to the next inevitable hard day. Ehlers-Danlos syndrome (EDS) is a rarely diagnosed condition that affects every system in the body. It mismanages the production of collagen, the protein “glue” of the body, and it weakens every part that is involved. Skin, joints, ligaments, and hollow organs are directly affected — which leaves the rest of the body with a cascade of struggles. There are 13 different types of EDS, and more are added as they are discovered. Some are more severe in their presentation than others, and they affect each patient differently. This makes it difficult to have a universal treatment plan for all of the symptoms that may occur. Currently, there is no cure for Ehlers-Danlos syndrome, so mediating a body’s response to the collagen defects incrementally is typically the best way to have the highest quality of life. Also, responding to each patient’s individual difficulties in their own way can help them feel validated and respond better to treatments that can truly help. One major hurdle many of us with EDS often have to deal with is not being heard and treated properly by our doctors. Generally, doctors are not trained to deal with conditions that can affect every part of the body. Medicine is usually more of a “reactive” profession — treating what is obvious and emergent — than a proactive trade in which symptoms are treated before they get out of hand. This system can be difficult to navigate as a chronically ill patient with multiple needs. We are sometimes pushed through appointments without having the time to dig to the root of each symptom completely. The areas in which we live, the insurance that we have (or don’t have), and the amount of money we are able to spend on treatments and out-of-pocket costs are big factors in the amount of care we are able to obtain. This process can leave us feeling lost, embittered, and alone when we are not able to stay on top of our chronic illnesses. It can also make us feel ecstatic, hopeful, and accepted when we are simply heard and a doctor is willing to try the treatment plans we have researched so diligently. There are often no easy answers for this, and no amount of being more assertive about what our needs are can necessarily help. It’s a delicate balance in a system that is not built for treating chronic illness. I’ve had multiple doctors placate me to not look for further diagnoses, stating that “One ‘zebra’ found is enough” or “We like to keep everything in one basket,” though doctors don’t often realize that with EDS, all diagnoses are the same “zebra” and in the same basket. The more identifiable traits that can be addressed and the more manageable our entire syndrome can be, the higher the quality of life and the greater longevity we’ll tend to have. Another major hurdle we often deal with is having bodies that have “minds of their own” and will often not cooperate when we want them to be active. Many types of EDS are multi-systemic conditions that have many comorbidities, which are other illnesses or conditions that are caused by Ehlers-Danlos syndrome. EDS is also a progressive illness, which means it can continually get more severe as we age. When we have flares that exacerbate the symptoms in one body system, it can have a ripple effect to other systems and be so overwhelming, painful, and untreatable that we cannot leave our homes. These ripples can last for days, months, or even years without proper treatments, guidelines, and cures. Living with EDS can be a never-ending cycle when there are so many factors that lead to delicate imbalances in such a difficult-to-manage system. We must often consider everything we consume, how we sleep or spend our time, where the bathrooms are at every location, whether we’ve been keeping up with a hygiene routine, how accessible the areas we wish to visit are, and the effects we may have to deal with after a social excursion of any kind. At this time last year, I was barely able to leave my home for appointments — and I couldn’t do much else. My health had gotten to the point of being bigger than I could handle, and I couldn’t stabilize it. For the sake of learning, growing, and teaching, I’ll share some details in this latest physical hurdle. 1. I feel exhausted to the point of often not being able to drive myself. Even walking the dogs in a zombie-like state was a chore I could hardly endure. Running an errand? Never. I do have blood sugar symptoms too, which contribute to exhaustion, but fortunately, there are current studies regarding EDS and diabetes. Many rare diseases are on the verge of breakthroughs of varying degrees all over the nation, but for now, I struggle with being tired. 2. Everything I eat goes through me. I can no longer determine which foods I was sensitive to even though I don’t have many foods I can eat. CT scans revealed stool retention even after a 24 hour cleanse, so I was “backed up.” Everything getting through is called “overflow,” which generally consists of collected water. I was incontinent because of this — sleeping on pads and towels, only leaving the house when necessary, and using pads, crossing my fingers, and hoping for the best. This is a rarely talked-about part of health decline and can keep a person at home all on its own. I knew the next steps could be dire, and I wasn’t looking forward to those possibilities. 3. My thyroid wasn’t always producing as much of its hormone as it should be. This is no surprise since I only have half of my thyroid. Just getting it within “healthy range” was not enough for me — I had to fight to get it down to a lower number based on symptom improvement. This took several months and appeals to the doctor, and it made a positive difference, but did not clear up all of my health struggles. I’m used to not having all health symptoms worked out, but the more symptoms resolved, the better. 4. My muscle fatigue and weakness has increased. This is probably because of all of my exacerbated symptoms. My legs are the weakest, but I do have generalized muscle weakness due to neurological issues resulting from hypermobile Ehlers-Danlos syndrome and tethered cord . The earlier EDS and its comorbidities are diagnosed and treated, the better. 5. I’m always in pain everywhere. I believe the increase in my pain is due to exacerbated symptoms and other conditions, like lipedema and Sjogren’s syndrome, that I’m still trying to get diagnosed. This is yet another reason why diagnoses and treatments are so important. 6. My skin and liver are struggling right now. I’ve always had skin that flares after a shower. Lotion helps, and treating mast cell symptoms does so even more, but splotchy, red, dotty, tiny, itchy patches everywhere? This is new. Also, we found a spot on my liver, and we have to keep an eye on it. I had one “good” organ left! Ha! 7. I visit many doctors. I even finally have a new internist, but they just seem to be a cog in the wheel of never-ending tests, procedures, and difficulties. I have recently received some help in much better ways than I have before, and now, I’m starting to catch up on treating a few of my chronic symptoms. I feel blessed that I still have some life left in me and am not completely relegated to my house at all times, but I still have to be vigilant about “overdoing it.” I sometimes feel like I have a cloud of worry hanging over my head as I wonder when my life-changing symptoms will surprise me next, even as I try to live my life to its fullest and stay grateful for what I have. When you see me smiling, it is genuine. My smile may mask my difficulties, but I’ve truly found happiness in focusing on the positives. Having a silly husband who naturally evokes laughter helps too. Here are some treatments that are currently helping and making a positive change for the better: 1. I get saline IV infusions. Navigating the medical system to receive this much-needed care was difficult, but the effort was worth it. I now access my own port weekly and administer my own fluids. I have dysautonomia (My autonomic nervous system does not regulate properly), I have hypovolemia (I have low amounts of bodily fluids), and I have a lot of neurological damage that keeps my gastrointestinal (GI) system from working correctly. This treatment has brought some of my body back to life. 2. I take supplements. Some of my supplements help me rebalance electrolytes, while others keep my joints and tracts in working order. Potassium, magnesium, salt, vitamin D3, B12, multivitamin, even cranberry and glucosamine chondroitin all play roles in helping all of my systems work as well as they can. 3. I wear braces. It’s best for me to stabilize my joints from the ground up. I have shoe orthotics to keep my arches in place and ankle, knee, and joint braces to keep everything as stable as possible — which helps lower my pain levels and increase my leg stamina. 4. I use adaptive devices. I use a wheeled walker for any distance outside of my home and a power wheelchair for longer distances that I can’t navigate on my own. My legs gradually lose power as they are used. This is common in EDS, but society can be difficult to navigate when your ability level isn’t constant. Most days I don’t notice reactions, other days I can’t help but notice. Hopefully, someday, tolerance and objectivity will rule. 5. I eat to meet my body’s needs. I don’t eat meat or gluten, and I watch my histamine intake too. With so many medical conditions constantly vying for my attention, I try to keep all of my systems as happy and compliant as I can. I cannot tolerate statins, and after my stroke, eliminating meat was the best solution for keeping the right cholesterol levels and a healthy heart rate and blood pressure. I keep my protein levels up with plant proteins. My body doesn’t respond well to gluten, so it’s not an option. Everything in my body works more easily when my GI system is engaged and functioning as best as it can. When the medical community and our physical bodies are determined to hinder our best efforts, I am thankful that the internet can provide some answers and relief. It helps me find other doctors in my area and locate insurance providers through the help of online support groups. The experiences and connections that others with chronic illness share can be so helpful in finding any small measure of positive reinforcement. A friend in one group stated that people with chronic illness often get so used to being in “survival mode” that we may tend to have a different quality of life baseline than most other people have. That sure hit home. We also may “mask” well to try to fit in, but masking our symptoms can be invisible to others and may twist our perceptions of ourselves. If you’ve been surprised by anything I’ve mentioned thus far and wonder why you don’t know these things are happening, keep in mind that “survival mode” is a place in life that may make it difficult to reach out or talk about what we may be going through. Chronic illness survival calls for extra grace, mercy, and leniency in not taking cancellations or long pauses personally. In fact, reaching out can help us have support systems that can help us move forward. It can also feel daunting to breach the chasm that forms while we’re busily trying to keep our bodies going or are figuring out how to navigate our conditions in public. Consider that some of us with chronic illness may feel like a “burden,” which can take a lot of work to overcome. In fact, it took me two weeks to write this article. It is daunting to put myself out there and be vulnerable about such life-altering symptoms, but hopefully, the help it can potentially bring others will be worth it. Trying to receive the basic care needed to enhance wellbeing with chronic illness can feel like a two-step shuffle. The possibilities of something going “wrong” can seem endless, but I urge and encourage anyone struggling with lack of proper care and diagnoses to strive to move forward regardless of the hurdles. While it can feel lonely and daunting along the path of living with chronic illness, you are not alone. Together, just like a herd of zebras, we are a dazzle, and the more we all learn from our conditions independently, the more we can share and look forward to as a group. We can be a flock of birds on a wire, perched perilously but proudly.

How Dogs Can Teach Us How to Treat People With Chronic Illness

It’s Friday, Feb 18, 2022 at 12:28 p.m. One week without you. It’s a quiet feeling I’ll reluctantly get used to — maybe someday. I miss the stirring in the corner. That sound of restlessness that brings a tiny, 10-pound white-and-tan, wriggling, happy, sassy shih tzu shooting out from behind the ottoman to demand something. A treat? Outside time? Dinner? A quick rub-down and some acknowledgement? I’d gladly do whatever you asked of me. Every. Single. Day. How’d we get so lucky to have you in our lives? Well, here’s how it all began. One fateful day in September 2011, our kids politely asked if they could bring a dog into our home. They eventually started crying, and as the tears flowed, I was convinced like always. I may act tough, but I’m a pile of mushy optimism inside, and I’m pretty sure they all knew it. Soon after, a fuzzy white cloud bounded into our living room. A tiny, vibrant, confident four-legged creature looked right at my home and said, “OK, this will do.” It sounded more like “Ah-woo-woo-woo-woo-woooo” to our ears, but it was pretty obvious exactly what she meant. At that time, I was in and out of countless doctors’ offices and many different medical facilities from Iowa City, Iowa to Rochester, Minnesota, and I was still struggling to find answers to the complex medical challenges I was experiencing on a daily basis. I was no longer able to walk the way I used to — my legs only took me so far, and then they would stop. It was all pretty shocking at the time. My husband was relegated to shower assistant, clothing-buttoner, and feeder and waterer of all living things in our house, including myself, and he carted me to many of my appointments and to work and back home. To say we were picked up right out of our lives and transported to a whole different way of living is an understatement — and one we fervently denied. We even purchased a life insurance plan for me since things were looking grim enough to need to plan for a shorter future. I was eventually diagnosed with Ehlers-Danlos syndrome and many of its comorbidities — illnesses without a cure. So what was I doing bringing another mouth to feed into my household? Well, here’s how that fits into this story. Sadie Poo Henderson, who was likely born in 2009, was a stray of sorts. She lived on the streets, and our kids helped rescue her. Then — to my ultimate surprise and delight — that seemed to give Sadie the license to rescue others. Sadie was — as we would call humans — a “people person.” She walked right up to everyone she ever met and lightly placed her forepaws onto their pant legs, looking longingly up at them with her brown, beautiful, understanding eyes, as she said, “Hi! I love you!” (Or as we could hear, “woo-woo-wooo.” That was her way of living. She blessed so many people — even “pup doubters” — with her simple, elegant presence and captured a tiny piece of their hearts forever. I had the pleasure of watching her do this over and over and over again. It isn’t just what she did for others that held her dear to me, though — it’s also how she helped me cope with my medical struggles. I didn’t choose this lifestyle. In fact, I did so many things to stop this disease from ending up this way that I can’t even name all of the efforts I made. There I was, quietly resigned to the life I led and grateful for the many blessings I find weaving in, out, and around it every day. Sadie was one of the biggest — she was such a strong motivation to keep moving forward. She also has two “sisters” — yes, I also adopted two other wayward four-legged souls, and am so very glad we did. Sadie started it, though. She “alpha-ed” our other dogs with her indignant, take-charge attitude, and they let her. It was a source of endless enjoyment and entertainment to watch them all interact. I can’t even figure out how the dynamics between all of our dogs worked, but it was an amazing process to be a part of. Last Friday, Sadie had a difficult time trying to leave this world. It was like her time was up, and she knew it, but she was reluctant to let us all go. At least as much, we were reluctant to give her up too. She did her job in our home very well, and I am so proud of her. A piece of my heart will be forever marked with her paw prints. My life is forever altered by her loyal and steadfast companionship from our town all the way to Texas, Connecticut, Minnesota, and Missouri — there aren’t enough hours in a day to name all of the places she was so excited to visit with us. Whether she accompanied us for doctor’s appointments or family visits, she was delighted to go along for the ride. As I type through tear-stained glasses, willing the anguish and the happiness through my body, into my fingertips, and onto the keyboard to tell the fervent story of how a tiny, little dog ultimately saved me, I want to take this moment to express how very deeply disability can affect a person’s life. This is something I feel fervent about, but am hesitant to talk about it with people who don’t experience it themselves. Judgment is an even tougher pill to swallow than the handfuls of pills I have to take every day. There are articles all over the internet outlining how life-changing and stress-inducing disability can be, but disability is vastly misunderstood by the “well” community. As people with disabilities, we may have been part of “well” society and have played by its rules, so getting “kicked out” and forgotten about is sometimes a daily chore to cope with. Accepting vast changes — from income changes to physical and mental adjustments — can be mind-boggling when you’re also trying to manage whatever illness or injury may have placed you on the sidelines to begin with. Oftentimes, these illnesses are just managed, and as time rolls on, they escalate. This may create a new reality to have to accept regularly as physical limitations may become more prevalent with each passing day. Lots of people often think, if they need something, they’ll call, and someone will answer — and they’ll keep up with others too. I’m here to say that is not the case in my experience. I’ve experienced and heard some others say that the disability community are not only a forgotten group of people, but we also aren’t sitting on the sofa eating bonbons and watching “Family Feud,” waiting to think about calling a friend. We may feel like we are caught in a trap — one we rarely have enough wherewithal to climb out of. And when we climb out of the holes we dug, where did everybody go? I understand, I do. I’m the queen of making excuses for everyone, and I’m great at believing them, and I’m fine with that. Sometimes people take it personally that they don’t receive a phone call from someone who’s “sitting at home.” But, hey, who on Earth is lining up to confront others? Not me. Except there’s this tiny dog. Her name is Sadie Poo Henderson, and she said she was my friend, and she told me I’d never be alone, and she’d love me no matter what. (Ah-woo-woo-wooooo-woo-woooooo…) She taught me the value of acceptance and of taking a hard situation and turning it into a life worth living. (And she’s got me covered because our dog Lola, who was brought here for her, is kissing all my tears as I type.) But not everyone has a Sadie Poo (and a Lola and a Boo), and every day is not a “Sadie Poo can fix this” kind of day. Not all struggles bring folks out of their shells and to a phone, and not all people are comfortable enough with their own illnesses to ask for help. Having an illness that will not go away is often a barrier, and some people eventually slowly stop acknowledging such difficulties because they are so misunderstood. No one is perfect, and not everyone requires companionship as often as some, depending on personality and temperament. If you are helping out grandma or calling your friend who is too sick to work, I commend you. Please understand what a big deal that is, and please learn why so you can share it with others. Likewise, if you are dealing with chronic illness , I hope your social needs are met on a level that makes you comfortable — be it from a dog, a bird, or a person who calls or texts you every once in a while. To those who want to help, I encourage you to ask the tough questions, be interested in others’ struggles, and care on their level. Let’s just try to meet each other where we are — not where we think each other might be. Some days, our timing may be off, or our dryer is on the fritz, and our lunch was burned, and the cat puked in our slippers, and we can’t get to the phone and call each other back. In our busy lives in the “fast lane,” it can be hard to find the time for others. Still, think about the amount of time you spend regaling acquaintances with stories of your daily life, and try to remember there are folks out there who only make it to doctor appointments on a regular basis, so they may not have hours to communicate during the week, the month, or even the year. Remember Harold in accounting who had to take early retirement for a massive stroke . Remember Luella down the street who used to have a beautiful garden until her severe arthritis took away her ability to “florify” the neighborhood. Remember Susan, whose child is sick so she never comes to gatherings any more. The list is endless, but you don’t necessarily have to walk a mile in others’ shoes to empathize with what it’s like to live with a health condition. Just listen to Sadie Poo because she says it best (Ah, woo-woo-woo-woooo). Translation: “I had an important job of taking care of my humans, and for some reason, my mommy was always home with me. We had the best life.” Be like Sadie Poo.

How Dogs Can Teach Us How to Treat People With Chronic Illness

It’s Friday, Feb 18, 2022 at 12:28 p.m. One week without you. It’s a quiet feeling I’ll reluctantly get used to — maybe someday. I miss the stirring in the corner. That sound of restlessness that brings a tiny, 10-pound white-and-tan, wriggling, happy, sassy shih tzu shooting out from behind the ottoman to demand something. A treat? Outside time? Dinner? A quick rub-down and some acknowledgement? I’d gladly do whatever you asked of me. Every. Single. Day. How’d we get so lucky to have you in our lives? Well, here’s how it all began. One fateful day in September 2011, our kids politely asked if they could bring a dog into our home. They eventually started crying, and as the tears flowed, I was convinced like always. I may act tough, but I’m a pile of mushy optimism inside, and I’m pretty sure they all knew it. Soon after, a fuzzy white cloud bounded into our living room. A tiny, vibrant, confident four-legged creature looked right at my home and said, “OK, this will do.” It sounded more like “Ah-woo-woo-woo-woo-woooo” to our ears, but it was pretty obvious exactly what she meant. At that time, I was in and out of countless doctors’ offices and many different medical facilities from Iowa City, Iowa to Rochester, Minnesota, and I was still struggling to find answers to the complex medical challenges I was experiencing on a daily basis. I was no longer able to walk the way I used to — my legs only took me so far, and then they would stop. It was all pretty shocking at the time. My husband was relegated to shower assistant, clothing-buttoner, and feeder and waterer of all living things in our house, including myself, and he carted me to many of my appointments and to work and back home. To say we were picked up right out of our lives and transported to a whole different way of living is an understatement — and one we fervently denied. We even purchased a life insurance plan for me since things were looking grim enough to need to plan for a shorter future. I was eventually diagnosed with Ehlers-Danlos syndrome and many of its comorbidities — illnesses without a cure. So what was I doing bringing another mouth to feed into my household? Well, here’s how that fits into this story. Sadie Poo Henderson, who was likely born in 2009, was a stray of sorts. She lived on the streets, and our kids helped rescue her. Then — to my ultimate surprise and delight — that seemed to give Sadie the license to rescue others. Sadie was — as we would call humans — a “people person.” She walked right up to everyone she ever met and lightly placed her forepaws onto their pant legs, looking longingly up at them with her brown, beautiful, understanding eyes, as she said, “Hi! I love you!” (Or as we could hear, “woo-woo-wooo.” That was her way of living. She blessed so many people — even “pup doubters” — with her simple, elegant presence and captured a tiny piece of their hearts forever. I had the pleasure of watching her do this over and over and over again. It isn’t just what she did for others that held her dear to me, though — it’s also how she helped me cope with my medical struggles. I didn’t choose this lifestyle. In fact, I did so many things to stop this disease from ending up this way that I can’t even name all of the efforts I made. There I was, quietly resigned to the life I led and grateful for the many blessings I find weaving in, out, and around it every day. Sadie was one of the biggest — she was such a strong motivation to keep moving forward. She also has two “sisters” — yes, I also adopted two other wayward four-legged souls, and am so very glad we did. Sadie started it, though. She “alpha-ed” our other dogs with her indignant, take-charge attitude, and they let her. It was a source of endless enjoyment and entertainment to watch them all interact. I can’t even figure out how the dynamics between all of our dogs worked, but it was an amazing process to be a part of. Last Friday, Sadie had a difficult time trying to leave this world. It was like her time was up, and she knew it, but she was reluctant to let us all go. At least as much, we were reluctant to give her up too. She did her job in our home very well, and I am so proud of her. A piece of my heart will be forever marked with her paw prints. My life is forever altered by her loyal and steadfast companionship from our town all the way to Texas, Connecticut, Minnesota, and Missouri — there aren’t enough hours in a day to name all of the places she was so excited to visit with us. Whether she accompanied us for doctor’s appointments or family visits, she was delighted to go along for the ride. As I type through tear-stained glasses, willing the anguish and the happiness through my body, into my fingertips, and onto the keyboard to tell the fervent story of how a tiny, little dog ultimately saved me, I want to take this moment to express how very deeply disability can affect a person’s life. This is something I feel fervent about, but am hesitant to talk about it with people who don’t experience it themselves. Judgment is an even tougher pill to swallow than the handfuls of pills I have to take every day. There are articles all over the internet outlining how life-changing and stress-inducing disability can be, but disability is vastly misunderstood by the “well” community. As people with disabilities, we may have been part of “well” society and have played by its rules, so getting “kicked out” and forgotten about is sometimes a daily chore to cope with. Accepting vast changes — from income changes to physical and mental adjustments — can be mind-boggling when you’re also trying to manage whatever illness or injury may have placed you on the sidelines to begin with. Oftentimes, these illnesses are just managed, and as time rolls on, they escalate. This may create a new reality to have to accept regularly as physical limitations may become more prevalent with each passing day. Lots of people often think, if they need something, they’ll call, and someone will answer — and they’ll keep up with others too. I’m here to say that is not the case in my experience. I’ve experienced and heard some others say that the disability community are not only a forgotten group of people, but we also aren’t sitting on the sofa eating bonbons and watching “Family Feud,” waiting to think about calling a friend. We may feel like we are caught in a trap — one we rarely have enough wherewithal to climb out of. And when we climb out of the holes we dug, where did everybody go? I understand, I do. I’m the queen of making excuses for everyone, and I’m great at believing them, and I’m fine with that. Sometimes people take it personally that they don’t receive a phone call from someone who’s “sitting at home.” But, hey, who on Earth is lining up to confront others? Not me. Except there’s this tiny dog. Her name is Sadie Poo Henderson, and she said she was my friend, and she told me I’d never be alone, and she’d love me no matter what. (Ah-woo-woo-wooooo-woo-woooooo…) She taught me the value of acceptance and of taking a hard situation and turning it into a life worth living. (And she’s got me covered because our dog Lola, who was brought here for her, is kissing all my tears as I type.) But not everyone has a Sadie Poo (and a Lola and a Boo), and every day is not a “Sadie Poo can fix this” kind of day. Not all struggles bring folks out of their shells and to a phone, and not all people are comfortable enough with their own illnesses to ask for help. Having an illness that will not go away is often a barrier, and some people eventually slowly stop acknowledging such difficulties because they are so misunderstood. No one is perfect, and not everyone requires companionship as often as some, depending on personality and temperament. If you are helping out grandma or calling your friend who is too sick to work, I commend you. Please understand what a big deal that is, and please learn why so you can share it with others. Likewise, if you are dealing with chronic illness , I hope your social needs are met on a level that makes you comfortable — be it from a dog, a bird, or a person who calls or texts you every once in a while. To those who want to help, I encourage you to ask the tough questions, be interested in others’ struggles, and care on their level. Let’s just try to meet each other where we are — not where we think each other might be. Some days, our timing may be off, or our dryer is on the fritz, and our lunch was burned, and the cat puked in our slippers, and we can’t get to the phone and call each other back. In our busy lives in the “fast lane,” it can be hard to find the time for others. Still, think about the amount of time you spend regaling acquaintances with stories of your daily life, and try to remember there are folks out there who only make it to doctor appointments on a regular basis, so they may not have hours to communicate during the week, the month, or even the year. Remember Harold in accounting who had to take early retirement for a massive stroke . Remember Luella down the street who used to have a beautiful garden until her severe arthritis took away her ability to “florify” the neighborhood. Remember Susan, whose child is sick so she never comes to gatherings any more. The list is endless, but you don’t necessarily have to walk a mile in others’ shoes to empathize with what it’s like to live with a health condition. Just listen to Sadie Poo because she says it best (Ah, woo-woo-woo-woooo). Translation: “I had an important job of taking care of my humans, and for some reason, my mommy was always home with me. We had the best life.” Be like Sadie Poo.

Dr. Neena Nizar

Parenting a Child Who Shares Your Rare Disease

My most troubling memory from my childhood is perhaps that of a little girl getting a prosthetic fitting. I was 15 at the time and battling my own demons. I had just recovered from extensive corrective surgery and was at the orthotics office to get a new pair of calipers (leg braces). I detested the massively inconvenient pieces of metal mesh that shackled my freedom and left me in endless agony and that time was no different. As I stared woefully at the metal contraption and then back at my sheepish father — who had broken his promise to never inflict another one of these on me — I couldn’t help but feel myself falling off another steep edge. It was then that the little girl with pigtails caught my eye. She was no more than five years old, her fingers taut around her mum’s loose clothing. The room was dimly lit, but from their silhouettes, I could tell she was missing her right leg. The mother was clearly struggling with the physical piece of prosthetic equipment precariously balanced in one hand and her limp child on her shoulder. I distinctly heard the soft cooing from her pursed lips as she soothed her child. In an instant, the mother turned and her eyes caught mine. I could see her fright. I’ve often seen that look in people seated in grim hospital waiting rooms — it’s a shocked look I’ve probably had umpteen times myself. Then suddenly she spoke, and I will never forget her words: “ Will my child be OK? ” I hated the universe at that moment. I hated it for not allowing me my own private moment of sadness, a moment to linger on my own plight. It wasn’t fair to not allow me my own tears, instead somehow tainting it with the guilt of an emotional hurricane. Consumed by my own pain, I felt like telling the mother that I thought it most likely wouldn’t be OK. In my opinion, living with a rare disease often makes life not OK. Her precious 5-year-old in simple pigtails might grow up to lead a very different life from what her mother had planned for her. From what I had personally experienced, she would likely be stared at and bullied, and she would probably have her soul crushed repeatedly. If she survived her rare battle, she might end up feeling useless and tired from a lifetime of trying. Her mother, at some points in her life, might be advised, preached at, and shunned, possibly losing friends and struggling with prolonged bouts of isolation. As someone who had already been through 15 years of challenges with a rare illness, I knew the trials can come fast and thick. The pain from the straps on my new brace was intense. I didn’t want to be a hero who had “gone through so much and survived.”  I wanted to scream, “I don’t want to ‘survive!’ I wanted to live!” But, I was too choked up to answer her. Today, I sit here as a mother of two special boys with an inherited rare disease, and I feel that mother’s clammy hand on mine. I desperately wish I could tell her all the things I know now: Life with a rare disease isn’t easy. In a field of horses, it may sometimes take 32 years for a doctor to see a zebra. But when you find your zebra, and when the little great things come, you rise like a phoenix from the depths of despair. You hustle. You armor yourself with so much knowledge that you become a resource for others starting similar journeys. You appreciate little moments of truth because they stay with you as gentle reminders for when things fall apart — reminders that yes, even if it took forever and a day, you found your way. That in this rare disease life, being rare keeps away the ones who callously hit “unfriend,” the naysayers, and the judgment dealers. Those who remain, you cherish and hold forever near. They become your unbreakable support circle, a buttress to your dirty laundry, empty fridge and uncooked dinner. That this rare disease journey may not be the one you planned, but it just may be the best-planned one for you. That you might not feel strong, yet you persisted. You spat out conditions, syndromes, and disorders, color-coded that 900-page medical history and insisted on fighting each day to make it the best it could be. That this rare disease life will break us and curse us with words you were religiously taught never to use. Sometimes you will hate yourself for feeling overwhelmed. Sometimes, you might only see the rare and not your child, inviting the occasional pity party. But after letting it out, you stay yourself because it’s tomorrow, and you straighten that crown. That this rare disease marathon teaches you to turn away another talisman and refuse a trip to a distant sacred temple famous for “miracles.” But you continue to see mountainous miracles past test results, assessments, and scales of progress. You have your own measure of awesomeness calibrated to a special love, joy and happiness privy only to the rare. That for this rare disease fight, you don a superhero’s cape and slay hospital visits, therapy sessions, surgeries and recoveries, and heaps of “I’m tired’s.” The emotions are so deep and sharp that in the end they leave you raw, exposed and in never-ending pain. But when the time comes, you know you’d do it all again. So to that special mother out there with her special rare disease child with pigtails, I know by now you have found your own answer. And to all the rare disease warriors out there beginning this journey, you will find your way. This blog was originally featured here on BraunAbility We want to hear your story. Become a Mighty contributor here .

Community Voices

Pandemic from a Chronic Viewpoint

“EVERYTHING WE DO BEFORE A PANDEMIC WILL SEEM ALARMIST. EVERYTHING WE DO AFTER WILL SEEM INADEQUATE” – Michael Leavitt

As of today (Wednesday, March 18, 2020) something unprecedented in our history has occurred: many countries have been asked by their governments to remain at home. We are all at war, right from our own living rooms. It’s new, unfamiliar territory and we’re all learning about it as we go, including how it spreads, which is a concept that is constantly updated as we learn more about it.

It’s in our news stories, our social media feeds, and on our minds- this new reality that has leveled the playing field, globally. I am well-informed about the effects of the virus, and the percentages involved in this viral storm, since I’m familiar with medical research as a part of my own conditions. It can all seem daunting, yet I hold on to hope that most people in the U.S. will make it through this, virtually unscathed, physically. However, I’d like to share my personal viewpoint as a chronically ill member of society who lives with a rare and incurable disease.

I’d like to begin by stating I am not afraid of the corona virus. I’ve learned its origin, how it spreads, and how we are all susceptible. I don’t believe in allowing fear to control me, because this virus has a will of its own that I cannot change. I do believe in the importance of staying informed through reputable sources and being mindful of our civic duty to follow guidelines. They are in place not only for our own benefit, but for the benefit of all around us.

I will take this teachable moment to share what I’ve learned about this ordeal that does have me worried, on a personal level. I’ve been a part of the medical community as a chronically ill patient for the last 14 years. I have a unique experience, compared to the “normal” community of folks who visit doctors and hospitals for “regular” medical necessities i.e. annual exams, cold and flu checks, and having babies or knee replacements.. you get the idea. I know many of my doctors, nurses and pharmacists by name, as does a majority of the chronically ill folks I keep up with in international online groups. Because of this chronic lifestyle, as I read about the experiences of other countries, Italy, China, Switzerland to name a few, I can place myself in the heart of the battle. I visualize the familiar faces of the nurses who care for me at the hospital in Council Bluffs every week, not to mention my own medical staff family members who work on the front lines. I can imagine exactly how the hallways and rooms that I wander through will change drastically, how clinical staff will be exhausted and possibly become ill themselves as they are doing their utmost best to save our lives. They will have the crushing responsibility of choosing between savable patients and those who will be turned away. You see, the problem is not in the virus itself, nor the fact that it might not effect most people terribly. For us, the issue lies in the susceptibility we have in becoming markedly ill with our very own illnesses, and not being able to receive the care we will so desperately need because there is no room for us.

How many people are affected by chronic diseases? Generally incurable and ongoing, chronic diseases affect approximately 133 million Americans, representing more than 40% of the total population of this country- projected to grow to an estimated 157 million, with 81 million having multiple conditions. Not to mention, for normal folks out there, leading causes of death in the U.S. are heart disease and cancer. When hospitals are brimming with corona virus cases, how can people who require treatments or whose illness flares going to get the treatment they need to stay alive and well? I’ve already imagined life without weekly IV, and I am facing more physical issues than I care to list, with the very worst case scenario being a stroke. I live with genetically smaller veins in my brain (due to my chronic illnesses), which is most likely what prompted my first stroke. I was lucky to receive treatment in the ER in time, and though I continue to have short term memory and dysphagia issues, they are mild in comparison to not being able to speak at all, nor write, as I was that night. The possibility that I won’t be able to keep up with my treatments, and that the ER will not have an area to treat a stroke is more disheartening to me than working through a virus, no matter the outcome. This is not a far-fetched idea- it is the current situation in Italy.

I urge every U.S. citizen not to mire in the fear and helplessness this situation can bring, for fear of the unknown is common. Instead, be aware of the impact our daily lives can have on others. Arm yourself with knowledge and common sense. Take part in ‘flattening the curve’. We can get through this together, with less impact than other countries are facing, if we learn from them and our healthcare professionals immediately. In spite of the inevitable future, I believe my life is just as valuable as the next person’s. Let’s be proactive collectively, bearing that theory in mind. I have been encouraged by the groups of people coming together for the good of others and their families in this difficult time. Here are just a few simple guidelines to live by for the foreseeable future, as well as:

• BE POSITIVE and maintain kindness

• HAVE SOME FAITH – in whatever spiritual guidance you seek, and in each other.

• WASH YOUR HANDS, often and well.

• DON’T TOUCH anything in the store and set it back down for someone else to pick up.

• STAY HOME (only you know how effectively you can maintain this guideline) OR PRACTICE SOCIAL DISTANCING. Be mindful of the people and establishments you come into contact with. If they become infected and you are asymptomatic, stay home!

• DON’T FLY- everything is closed anyway.

• LIVE LIKE YOU HAVE A TRANSMITTABLE VIRUS (even if you don’t). We continue to learn more about this virus every single day. It’s brand new, and formidable, and there is much to learn as it mutates and changes. Please do not assume to know how it will effect you or others.

• DON’T SPREAD MISINFORMATION. If it seems highly unusual, it probably is. Please fact check before reposting! Spoiler alert: No BATS were eaten to kick start this pandemic.

Be well, know you are loved, and see you on the flip side.. -ah

1 person is talking about this
Community Voices

Pandemic from a Chronic Viewpoint

“EVERYTHING WE DO BEFORE A PANDEMIC WILL SEEM ALARMIST. EVERYTHING WE DO AFTER WILL SEEM INADEQUATE” – Michael Leavitt

As of today (Wednesday, March 18, 2020) something unprecedented in our history has occurred: many countries have been asked by their governments to remain at home. We are all at war, right from our own living rooms. It’s new, unfamiliar territory and we’re all learning about it as we go, including how it spreads, which is a concept that is constantly updated as we learn more about it.

It’s in our news stories, our social media feeds, and on our minds- this new reality that has leveled the playing field, globally. I am well-informed about the effects of the virus, and the percentages involved in this viral storm, since I’m familiar with medical research as a part of my own conditions. It can all seem daunting, yet I hold on to hope that most people in the U.S. will make it through this, virtually unscathed, physically. However, I’d like to share my personal viewpoint as a chronically ill member of society who lives with a rare and incurable disease.

I’d like to begin by stating I am not afraid of the corona virus. I’ve learned its origin, how it spreads, and how we are all susceptible. I don’t believe in allowing fear to control me, because this virus has a will of its own that I cannot change. I do believe in the importance of staying informed through reputable sources and being mindful of our civic duty to follow guidelines. They are in place not only for our own benefit, but for the benefit of all around us.

I will take this teachable moment to share what I’ve learned about this ordeal that does have me worried, on a personal level. I’ve been a part of the medical community as a chronically ill patient for the last 14 years. I have a unique experience, compared to the “normal” community of folks who visit doctors and hospitals for “regular” medical necessities i.e. annual exams, cold and flu checks, and having babies or knee replacements.. you get the idea. I know many of my doctors, nurses and pharmacists by name, as does a majority of the chronically ill folks I keep up with in international online groups. Because of this chronic lifestyle, as I read about the experiences of other countries, Italy, China, Switzerland to name a few, I can place myself in the heart of the battle. I visualize the familiar faces of the nurses who care for me at the hospital in Council Bluffs every week, not to mention my own medical staff family members who work on the front lines. I can imagine exactly how the hallways and rooms that I wander through will change drastically, how clinical staff will be exhausted and possibly become ill themselves as they are doing their utmost best to save our lives. They will have the crushing responsibility of choosing between savable patients and those who will be turned away. You see, the problem is not in the virus itself, nor the fact that it might not effect most people terribly. For us, the issue lies in the susceptibility we have in becoming markedly ill with our very own illnesses, and not being able to receive the care we will so desperately need because there is no room for us.

How many people are affected by chronic diseases? Generally incurable and ongoing, chronic diseases affect approximately 133 million Americans, representing more than 40% of the total population of this country- projected to grow to an estimated 157 million, with 81 million having multiple conditions. Not to mention, for normal folks out there, leading causes of death in the U.S. are heart disease and cancer. When hospitals are brimming with corona virus cases, how can people who require treatments or whose illness flares going to get the treatment they need to stay alive and well? I’ve already imagined life without weekly IV, and I am facing more physical issues than I care to list, with the very worst case scenario being a stroke. I live with genetically smaller veins in my brain (due to my chronic illnesses), which is most likely what prompted my first stroke. I was lucky to receive treatment in the ER in time, and though I continue to have short term memory and dysphagia issues, they are mild in comparison to not being able to speak at all, nor write, as I was that night. The possibility that I won’t be able to keep up with my treatments, and that the ER will not have an area to treat a stroke is more disheartening to me than working through a virus, no matter the outcome. This is not a far-fetched idea- it is the current situation in Italy.

I urge every U.S. citizen not to mire in the fear and helplessness this situation can bring, for fear of the unknown is common. Instead, be aware of the impact our daily lives can have on others. Arm yourself with knowledge and common sense. Take part in ‘flattening the curve’. We can get through this together, with less impact than other countries are facing, if we learn from them and our healthcare professionals immediately. In spite of the inevitable future, I believe my life is just as valuable as the next person’s. Let’s be proactive collectively, bearing that theory in mind. I have been encouraged by the groups of people coming together for the good of others and their families in this difficult time. Here are just a few simple guidelines to live by for the foreseeable future, as well as:

• BE POSITIVE and maintain kindness

• HAVE SOME FAITH – in whatever spiritual guidance you seek, and in each other.

• WASH YOUR HANDS, often and well.

• DON’T TOUCH anything in the store and set it back down for someone else to pick up.

• STAY HOME (only you know how effectively you can maintain this guideline) OR PRACTICE SOCIAL DISTANCING. Be mindful of the people and establishments you come into contact with. If they become infected and you are asymptomatic, stay home!

• DON’T FLY- everything is closed anyway.

• LIVE LIKE YOU HAVE A TRANSMITTABLE VIRUS (even if you don’t). We continue to learn more about this virus every single day. It’s brand new, and formidable, and there is much to learn as it mutates and changes. Please do not assume to know how it will effect you or others.

• DON’T SPREAD MISINFORMATION. If it seems highly unusual, it probably is. Please fact check before reposting! Spoiler alert: No BATS were eaten to kick start this pandemic.

Be well, know you are loved, and see you on the flip side.. -ah

1 person is talking about this

How Being an Empath With a Chronic Illness Has Made Me a Liar

I’m an empath. In general, I consider my ability to be finely tuned in to others’ mental or emotional states nothing short of a super power. I can scan a room and know how to interact with everyone in it. It doesn’t take me long to find out what makes another person tick, and then to know how to keep them ticking. Empaths also tend to actually feel others’ emotions, both joyful and sorrowful, as we would our own. It makes us a powerfully compassionate and generally likable bevy. But as either Voltaire or Spiderman is known for saying, “With great power, comes great responsibility.” Never have I felt this “responsibility” more than in the last few years. In late 2015 I was diagnosed with Chiari, more clinically known as an Arnold Chiari malformation type 1. Without delving into all of the symptoms, Chiari is characterized by painful trigger points and muscle spasms, dizziness, tinnitus, fatigue, nausea, intermittent weakness and/or paralysis, just to name a few of the symptoms. It is a serious and chronic condition that is rarely diagnosed, poorly understood, and has no real treatment other than to try and manage symptoms. Emphasis on the word “try.” Because I am both an empath and a Chiari warrior, I often find myself in tricky situations where I have to choose between my natural tendency to protect the feelings of others… or lie. More often than not, I choose the latter: 1. I lie to my dad when he asks if I’m still on “all that medication” because I know he worries about the long-term effects of my many prescriptions and their dosages. 2. I lie to my aunt when she asks if the brain surgery I had has “fixed” the problem, because I know she so desperately wants me to feel better. 3. I lie to my grandma when she asks if I’m still getting those headaches all the time, because I know she’s been praying her heart out for me. 4. I lie to my coworkers when they ask if I’m feeling OK, because I don’t want them to feel as if they should be taking on responsibilities that belong to me. 5. I lie to my massage therapist because I can tell how badly she wants to relieve my pain and muscle spasticity. 6. I lie to my doctor when she asks if I want to up the dosages on the medication that seeks to manage my pain, because I don’t want to seem like a pill popper. 7. I lie about my reasons for starting Christmas shopping in June, saying it’s because I like to be organized when really, it’s because I live in constant fear that a lengthy flare-up will make it impossible for me to do it during the actual Christmas shopping season. 8. I lie a lot by omission to almost everyone I know because I’m afraid of coming off as weak, a complainer, a drama queen, a party-pooper, self-centered, and assume that they don’t want to hear about my issues because they have plenty of their own. 9. I lie about how exhausting it can be just to get through the day because I’m afraid of my own reaction if I hear, “Yeah, I’m tired too,” one more time. 10. I lie about my reasons for declining to commit to social invitations because I live in constant fear that when the time arrives, a flare-up will force me to cancel anyway. Since being diagnosed, I have experienced a shift in how I see the world, and my place in the world. I regularly have to remind myself and those around me that my life isn’t over, it’s just different. I’m not a dishonest person, but I lie. Similarly, I’m not a victim, but I suffer. I lie because I choose not to transfer the burden of my suffering to those around me. As an empath, I feel the transferred struggles and the result mimics the endless tunnel that appears when two mirrors face each other. I lie because I’m a warrior, and warriors repudiate pity. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: Ferdiperdozniy