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  1. By: Chelsea Goldstein, Dysautonomia Information Network Has your child ever felt like a bad apple because they struggled to keep up in school due to their health? We know this is the case for many children with dysautonomia, and we know that appropriate education accommodations, along with empathy from their school officials, can dramatically improve their learning experiences. It may also help to know that your child is not alone - about 25% of children in the United states from ages two to eight live with chronic illness, other physical concerns, mental health issues, and/or behav
  2. By: Chelsea Goldstein, Dysautonomia Information Network Homeschool, distance learning, remote education, e-learning, and tele-education are but a few terms to describe the various structures of schooling that can be done from home (either full-time or part-time) with the assistance of technology. To minimize confusion, we will refer to all of these terms as distance learning for the rest of this article. If you or your child lives with dysautonomia, you may have been engaged in distance learning for some time. You may also have a story of your tireless battle with a school system to
  3. By: Chelsea Goldstein, Dysautonomia Information Network One of the many difficult aspects of living with dysautonomia is that very few products are designed specifically for our needs. The medications we take are usually considered "off-label" for dysautonomia, we use hydration products designed for athletes or children, and assistive technology is often created with other populations in mind. I will continue to dream of, and advocate for, a world where people with dysautonomia have a voice in the creation of technologies that support our everyday lives. In the meantime, this articl
  4. By: Chelsea Goldstein, Dysautonomia Information Network Living with chronic illness often feels like one big Catch-22. For example, we need to work to survive, but working can be so tough on our bodies that it causes precarious health. Many of us have left jobs we love as a result, but it's also in these moments that we need our reliable income the most to cover our medical bills and other expenses. If you can relate to this, you've probably had a roller coaster of a career path - like me - as you try to figure out just what job, exactly, will work with your body. One option is to co
  5. By: Chelsea Goldstein, Dysautonomia Information Network Perhaps, you've worked with your boss to make accommodations for your health at your job. You've been open with coworkers about your dysautonomia, and you've developed a handbook of pretty clever tricks to get through your workdays. Maybe you've even changed jobs in an effort to find a career that doesn't make you sick. Even still, you've used up all of your PTO, you can barely function when you get home from work, and weekends are consumed by trying to "heal" as much as possible so you can do it all over again next week. If thi
  6. By: Chelsea Goldstein, Dysautonomia Information Network If you are working and managing your chronic illness stop now. Take a deep breath, remind yourself that you are a rock star, and give yourself a high-five. It is difficult for anyone to have a career and manage the responsibilities of life such as family, household tasks, and self care. Throw chronic illness into that mix, and anyone who can balance their health and a career is a superhero. Or magician. Maybe a bit of both. If you aren't working, but are managing your chronic illness, remember that taking care of your health is
  7. By: Chelsea Goldstein, Dysautonomia Information Network If you have ever worked while living with a hidden chronic illness, you have probably struggled over whether or not to share your illness with your boss and coworkers. You've likely asked yourself questions such as: Should I tell my boss about my illness? Should I tell my coworkers? When should I tell them? Will I be treated differently once they know? These are big questions, and there is not one, correct way to answer them. The choice to disclose your health condition(s) at work is a personal one, and only you can decide the
  8. by Chelsea Goldstein, Dysautonomia Information Network Mental health conditions, like depression, are often difficult to talk about because of their stigma. If you live with dysautonomia and depression you may be even more hesitant to talk about your mental health needs out of fear that your dysautonomia will be dismissed as "all in your head." Unfortunately, this can lead to improper treatment of dysautonomia, depression, or both. However, we rarely discuss how it is normal to live with BOTH depression and dysautonomia. In fact, research demonstrates that about 25 to 33% of people
  9. DINET has always been grounded by the principle of support. In alignment with our mission of support, we believe Black Lives Matter and support organizations, movements and people working to reduce racism, discrimination, prejudice, violence and systemic injustice in our country and throughout the world. And, as an organization that believes wholeheartedly in advancing healthcare for our members who live with dysautonomia, we must acknowledge that we have not done a good job recognizing the inequities in healthcare experienced by Black Americans day in and day out, including those who l
  10. Full text pdf link below: 2020.03 V2 COVID-19 tips_CGoldstein.pdf
  11. WE NEED YOUR HELP. This is a scary time, to say the least. We know all of you are doing your best to stay as healthy as possible, but there are so many factors out of our control. As we are all trying to figure out how to navigate this pandemic, particularly when we live with dysautonomia, we have found ourselves asking “What can we do to help?” At DINET, we think our best course of action is to keep investing into our network as much as we can. This is a time when our virtual community is more of a strength than ever. Remember that… · It is okay to be scared or u
  12. Claire is a thirty-six-year-old mom, with a refreshingly real disposition, shares her experiences of living with POTS. Her dysautonomia is accompanied by gastroparesis, irritable bowel syndrome, hypermobile Ehler-Danlos Syndrome, polycystic ovary syndrome (PCOS), and endometriosis among others. She worked as a Certified Dental Assistant for ten years before she resigned due to disability. Though Claire recalls she has probably had POTS and EDS for many years, she officially sought a diagnosis at age twenty-eight. At the time, she was working full-time, married, and preparing to start a f
  13. By Chelsea Goldstein Meet Erin. She has talents for research and storytelling, both of which helped her excel in her work as an investigative journalist and managing editor of several magazines. When she began her career, she did not know that these talents would be central to discovering, in her mid-thirties, critical diagnoses including fluoroquinolone (antibiotic) induced dysautonomia, hyperadrenergic POTS, and neuropathy, that made all the difference in her health. Erin’s story shares some common elements with many of our experiences. She had a swift and severe reaction to a co
  14. Isabelle is a young, creative entrepreneur but that wasn’t always her plan. She excelled at tennis as a preteen and hoped to pursue it as a full-time career. This seemed possible until an episode of heat stroke during a tennis match caused her heart rate to be sustained around 180 beats per minute for several days thereafter. She knew something was wrong having been a relatively healthy young woman prior to the episode. However, the doctors in the emergency room she visited told her that her symptoms were “all in her head,” and they dismissed her heart rate as a byproduct of being an anxious,
  15. Traveling can be an undertaking for anyone, but it is particularly difficult for those of us who are balancing our precarious health and our everyday lives: you could be thinking, “How could I possibly think about travel in addition to everything else?” Travel IS possible with dysautonomia though it can be difficult. However, the rewards of traveling, whether they are exploring a new place or visiting loved ones, can be well worth the struggles. Here are five tips for traveling with dysautonomia: 1. Build in margin. This was the best travel advice I ever received from a stranger on a
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