Heidi

@chronicallysalty | staff
I live with POTS, a form of dysautonomia, and write a blog focused on tips and tricks to living with dysautonomia and similar chronic illnesses.
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Let’s talk about young adult mental health

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Let’s talk about young adult mental health

<p>Let’s talk about young adult <a href="https://themighty.com/topic/mental-health/?label=mental health" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="mental health" title="mental health" target="_blank">mental health</a></p>
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5 Things I Wish I Knew About Parenting a Child With a Rare Disease

Last year, I found myself emotionally and physically isolated as the primary caretaker of my son. In caring for him, I lost track of the things I should have been doing to take myself. But, through enduring this, I gained some perspective and learned some lessons about what we can expect to go through as caretakers of children with a rare disease. I now have more experience with accepting uncertainty, dealing with difficult and emotional situations, and navigating the medical system than I ever could have imagined. I have used my experience to write this list of five things I wish I had known about parenting a child with a rare disease. I hope that in some small way it can alleviate the shock of coping with a rare disease diagnosis for parents and caretakers and help prepare them for some of the things they will experience. Stay hopeful! You will always have more questions than answers. I am a curious Type A personality. I thrive on facts, information, and plans. At any given time, I have contingency plans for my contingency plans. Navigating the world of rare disease is like playing Twenty Questions, except everyone’s guessing, and you’ll never win. Making peace with uncertainty, or at least attempting to, helps ease the burden of exploring the world of the unknown. Your child will have a care team, but you won’t. While you get a crash course in organizing information, dates, names, diagnoses, locations, prescriptions, and paperwork, you will have a team of doctors and medical staff rallying behind your child. But you won’t have a dedicated team to help you navigate this difficult journey. You will be left in charge of your own care. Your own mental and physical health. Your own marriage and friendships. To my complete surprise, I found myself isolated, both emotionally and physically, during 2021. I was swept up in caring for my son that I lost myself, my needs, my wants. Most painfully, I failed to recognize the toll taken on my body and mind. We as parents experience trauma through the ups and downs of caring for our loved ones. For our own well-being, we must address and seek help processing this trauma. You will somehow possess superhuman patience and strength … and still lose your cool. In the wake of the many stressful moments you’ll encounter, people will make comments such as “I don’t know how you do it” and “I could never do all the things you do.” The absolute truth is I don’t know how I do it either. But I do. We do. All of us parents who are raising children with exceptional hurdles. I can stand firm and cross-examine the medical biller on why we are paying for a service that should be completely covered, then find myself drowning my sorrows, fears, and frustrations in a McFlurry wondering why this is my life as I wait for my son’s therapies to finish up. Learn to accept extreme emotions, you will ride them like riding waves on a jetski. You WILL see the world differently. For better or worse, your view of society will permanently change. You will become very aware of the flaws in assistance systems and the lack of resources. You will learn how to navigate conversations about disability, health, time, money, and freedom differently. Conversely, you will see more families like yours, and with that, a certain unspoken understanding of the difficulties others face will emerge. The shock of living in the zebra/rare disease world will never wear off. Now hear me out. Yes, the pain of diagnosis day will eventually feel like an echo. However, if your child requires additional support in the form of therapies, services, medication, or devices, you’ll experience bouts of blinding rage at the glaring gaps in systems that are supposed to help. Programs that you think will cover medical needs will not, friends and family may think your child will simply outgrow their illness and/or disability, and many doctors won’t have heard of your child’s diagnosis. These abnormal experiences are all very normal in our world: the rare disease world.

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A Love Letter to Family Caregivers Everywhere

Dear Fellow Caregivers, I know you’re probably reading this letter feeling exhausted and are looking for some support . I used to be a professional caregiver who traveled house-to-house to help families as needed. Then, my grandfather had a stroke, and his Alzheimer’s advanced quickly. I became one of his caregivers and a part of Generation Care , everyday people taking on the extraordinary role of caring for a loved one living with a serious illness. I discovered that there’s a lot more to caregiving when you aren’t approaching it solely from the perspective of a professional. Being a caregiver is not easy, but your loved ones hold a special place in your heart which can make the experience bittersweet. Because of this love, there is sometimes this overwhelming sense of responsibility towards the person you’re caring for. You feel a deep sense of connection with your loved one, and you often put yourself in their shoes, trying to come up with ways you can support not only their physical health, but also their emotional and mental health. I never truly appreciated the emotions and sense of responsibility and duty faced by caregivers until now. Caregivers are superheroes, but we’re human too. It can be hard sometimes to take a step back and focus on our own physical and mental well-being. I get it — it’s not easy just to say “no.” Sometimes I am the only person whom my grandfather can recognize or the only one at home who can prevent him from hurting himself or others when he’s caught up in a bad episode of sundowning. Even if I’ve had a long day at work or am in my own chronic illness flare, I’ll be there helping, because the truth is, he’s my superhero. However, even superheroes need support . For my grandfather, I support him as a caregiver and granddaughter. But what’s going to help fuel my own caregiver superpowers? I think caregiving is one of the most life-changing experiences a person can have. It gives you the opportunity to connect with a loved one on a deeper level, and it can reveal a lot about yourself as a person. My outlook on life has changed significantly since becoming a primary caregiver for a loved one, and one of the main takeaways I have is that your mental health should not be ignored. Allow yourself the space to recharge and invest in yourself too. For me, supporting my mental health looks like reading and writing paranormal fiction. Whatever that may look like for you, take the time for yourself even if it’s just five minutes. If you’re looking for some additional support, know that you’re not alone in your journey. There are a lot of people who appreciate the care you’re giving to your loved ones. That’s why I helped create this Digital Toolkit For Caregivers in partnership with Janssen , so that no matter if you’re new to caregiving or already have a lot of experience, there are some resources to support you and your loved one. Take what you need, and share it with others too — you never know just how much reaching out and supporting a fellow caregiver can help. Stay Mighty, Heidi

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What is it like to live with Parkinson’s disease?

<p>What is it like to live with Parkinson’s disease?</p>
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Sana Health’s Largest Non-Drug Clinical Trial To Manage Fibro Symptoms

For nearly 10 million Americans, the pain and discomfort from Fibromyalgia symptoms can significantly impact quality of life. Now, Colorado-based Sana Health, Inc hopes to offer relief to those living with Fibromyalgia symptoms through their audiovisual Sana Device. The company will soon launch a 1,000-person study for use of the Device in Fibromyalgia, the largest non-drug study ever conducted. This user study is being completed in tandem with several clinical trials. Fibromyalgia causes pain and a range of symptoms throughout the body. Current treatments include a combination of medications, physical and occupational therapies, cognitive behavioral therapy, and lifestyle management. This is often ineffective, and new research and treatment is needed. Briony, from The Mighty’s Fibromyalgia community, shared her experience with treatment, “I have tried everything under the sun to have even the tiniest bit of relief from the pain, but nothing works, so I suffer every second of every day in excruciating pain and there’s nothing I can do about this.” The Mighty is assisting Sana Health in recruitment for their user study for individuals in the U.S. diagnosed with Fibromyalgia who are seeking new options for symptom management. See if you’re eligible to try their device here. explore the sana device now The device is a comfortable eye mask and earbud combination which gently uses audiovisual stimulation (AVS) to guide the wearer into a state of relaxation. Clinical data from Sana device treatments show that targeted AVS impact the central nervous system. In a 16-minute session, the Sana device provides a patented series of light and sound pulses, alternating eye-to-eye and ear-to-ear. These sessions can be done at home through an app paired to the device. As the algorithm moves through three phases the user relaxes into a deeper meditative state. At the conclusion, individuals feel very relaxed and some fall asleep. Richard Hanbury, founder and CEO of Sana developed the Sana device after a Jeep accident in 1992 in Yemen left him with a spinal cord injury and chronic pain. After 14 months in the hospital, he was given a life expectancy of just five years. To address his own pain, he began to experiment with biometric sensors and neuromodulation patterns, hoping to recalibrate how his brain processed pain signals. The earliest prototype of the Sana device helped relieve his symptoms, and he went on to test it with the British and U.S. military services, Richard Branson’s Virgin Challenger flights, and the first Solar Impulse Flights. In 2016 he founded Sana Health to bring the technology to others who need it. “The therapeutic program provided in the 16-minute Sana session was refined over more than 25 years of trial and error by founder and inventor Richard Hanbury, in collaboration with neuroscientist Jeffrey Bower, PhD, who used EEG readings to validate the findings,” Sana Health told The Mighty. Users of the Sana device are finding relief for a range of symptoms, including pain, mood, and sleep disturbances. The device is breakthrough technology for anyone seeking non-drug treatment for symptoms related to Fibromyalgia. In fact, Sana has been awarded the status of Breakthrough Device Designation for the Sana device, for use in Fibromyalgia, from the Food and Drug Administration (FDA). This indicates that early testing shows that the device provides clinically meaningful improvement in symptom management for Fibromyalgia. With this status, Sana will receive priority when they submit Fibromyalgia studies for FDA approval. Users of the device speak well of its results. Jessica is a 44-year-old mother with Fibromyalgia, ankylosing spondylitis, and cancer. Her conditions left her fatigued and stressed, sleeping up to 16 hours a day at times. Regular use of the Sana device has helped her get better rest and left her with more energy. “With Sana, I am able to participate in life,” she said. “Something is centering me and something is grounding me. I can be in the moment.” The Mighty is excited to be able to assist Sana Health in recruiting patients into this landmark user study, and in the promise of this technology to help those managing Fibromyalgia. If you’ve been diagnosed with Fibromyalgia and would like to learn more about how to participate in the study with Sana, see if you qualify here .

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Mighty Caregivers: What does caregiving mean to you?

<p>Mighty Caregivers: What does caregiving mean to you?</p>
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Why Dysautonomia Awareness Month is So Important This Year

I am someone who always knows where the nearest seat and air conditioning is located. It used to be a major source of stress for me, but now this superpower is more instinctual. I may look normal on the outside, but I am often struggling with a high heart rate and fatigue from my nervous system trying to thwart gravity. Note to the public: gravity always wins. I live with postural orthostatic tachycardia syndrome , or POTS, a form of dysautonomia. Dysautonomia is an umbrella term to describe conditions that can result from a wonky autonomic nervous system. In my case, my nervous system doesn’t like being upright. Normally, your autonomic nervous performs a lot of great feats to keep your blood circulating normally when you stand up and gravity tries to pull everything to your feet. Your veins narrow and your blood pressure increases a little bit — all so that your brain can continue to get the oxygen it needs from your blood. In my case, my nervous system doesn’t want to be part of this great, coordinated concert and blood pools in my legs and feet. Trust me, it doesn’t look pretty. I used to be a homeschool teacher and one of my students kept saying my feet made me look like a vampire. Yup. He wasn’t wrong though. As a result of this wonkiness, I’m left with a high heart rate, adrenaline surges and fatigue, among a myriad of other wild, very unpredictable symptoms. The weirdest one? My pupils are always extremely dilated. Not the best look, especially when parents would get concerned about my “recreational activities” in middle school. I wasn’t always easy going with my experience with POTS and some days, I am very done with living with an incurable chronic illness. Thank goodness cookies and Sarah J Maas exist. Any form of dysautonomia can be debilitating, and while I don’t usually refer to myself as “sick” anymore, I am disabled. Although I’ve had low blood pressure my whole life, my journey with POTS didn’t really begin until after college. In 2017, I had several mild to moderate viral illnesses and finally, my body seemed to say that’s it , and I began experiencing severe POTS symptoms. Who knew a heart could accelerate from 70 to 180+ BPM in less than 30 seconds just by standing up! So why talk about POTS? October is dysautonomia awareness month , which focuses on advocacy for research and awareness. I am a huge advocate for dysautonomia education and research advances. An estimated 1-3 million people have POTS in the U.S. alone — that’s more than the number of people living with Celiac disease. It’s important to note that the vast majority of people who are diagnosed with dysautonomia are young women , a population that often struggles with finding the correct diagnosis and treatment for other “invisible” illnesses. Dysautonomia is most often misdiagnosed as anxiety and many physicians are unaware of dysautonomia. Both of these factors heavily influence the average 6-year diagnosis time for someone struggling with symptoms. This year, dysautonomia awareness month is different. In the past, whenever I would go to a new health care provider or the ER, doctors wouldn’t believe I actually was diagnosed with POTS at first. They would root through my records, seeking confirmation from my cardiologist, luckily one of the few leaders in POTS treatment . Looking at charts isn’t so simple because POTS doesn’t even have a medical code (ICD-10), a situation Dysautonomia International is advocating to be remedied shortly , so they’d have to read through years of notes. Talking about POTS has changed dramatically with the COVID-19 pandemic. While there are many potential “causes” of POTS, a lot of people have post-infectious POTS like me. Viral illnesses can cause changes in the body that impact the nervous system, resulting in fatigue, high heart rates, chest pain, low blood pressure, feeling out of breath, etc. Sound familiar? You guessed it — COVID-19 long-haul syndrome. Because of advocacy efforts from the dysautonomia community at-large, people struggling with COVID-19 long-haul syndrome have more resources available to them and hopefully have a shorter time to diagnosis than before. Although I would never wish any form of dysautonomia on someone, the increased cases of COVID-19 long-haul syndrome give me hope for advancements in medicine for dysautonomic conditions. One of the hardest aspects of treating POTS and other forms of dysautonomia is identifying the root cause of the syndrome. Research on COVID-19 long-haulers have already shown incredible potential advancements in our understanding of these conditions. If you’ve been suspecting COVID-19 long-haul syndrome, know that you’re not alone. I know that feeling like your body is out of control can be incredibly scary but know that it can get better. The Mighty has a community dedicated to COVID-19 long-haulers , so that you can get the support you need from people who get it. For anyone seeking more information about what it’s like to live with POTS, you can check out my personal blog, Chronically Salty . And if you don’t have any COVID-19 long-haul symptoms or dysautonomia, the best thing you can do is get the coronavirus vaccine to help protect yourself and your community, as well as help advocate for dysautonomia awareness month. There are a lot of people struggling with these invisible symptoms and just acknowledging their journey can make an incredible difference.

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How many hours of sleep is ideal for you?

<p>How many hours of sleep is ideal for you?</p>
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Submit Your Questions for an Upcoming Facebook Live Event

<p>Submit Your Questions for an Upcoming Facebook Live Event</p>
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