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  1. Full text pdf link below: 2020.03 V2 COVID-19 tips_CGoldstein.pdf
  2. 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 unsure. Our forum is a safe space to communicate with other people who live with dysautonomia and who have close loved ones with dysautonomia. In times of social distancing, this forum is an important tool to connect with people who may have similar thoughts, experiences, and fears regarding COVID-19. · One of our medical advisors has released suggestions about how to navigate dysautonomia and COVID-19 as best as possible. http://www.dysautonomiaclinic.com/1250-2/ · We are strong, and stronger together. While this is an unprecedented time, many of us have dealt with times of isolation due to our health conditions and symptoms. We have also dealt with the stress that can inevitably arise from health issues that are poorly understood, and have unclear outcomes. While we have never dealt with a pandemic like this, we hope that we can use our experiences to support each other and share coping strategies through this time. That being said, we were NOT given a choice to live with dysautonomia. It is unfair that we have had to face isolation and health anxiety for many years in a world that is not always understanding. It is also unfair that we may be more at risk of COVID-19 than other people who do not have underlying health conditions. However, over the years, we have also watched you all exchange countless pieces of wisdom, humility, vulnerability, and practical tips to cope with dysautonomia and all that it brings. We are continually humbled by the resilience in this community. While it is okay to not have it all figured out (none of us do!), we know that you are a strong group of individuals who have a lot of experience to share. So, in this time, we are calling on all of you to help others who may not have the same level of experience in coping with scary and poorly understood health issues, such as dysautonomia and COVID-19… We would like to put together a tip sheet for everyone (both people with dysautonomia and without) about how to cope with social distancing and anxiety around unknown health issues, such as COVID-19. We want this tip sheet to come from the collective knowledge of our community. So, please share any tips you have by answering the following two questions in the comments… 1. What tips or strategies do you have for coping with social isolation/distancing? 2. What tips or strategies do you have for coping with the stress that can arise from dealing with poorly understood health issues, such as dysautonomia and COVID-19? THANK YOU! These are scary times, and we will continue to be a network where we all try to navigate them together. We will take each day as it comes, and we are sending wishes for you all to stay as well as possible.
  3. 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 family. While she has always had some symptoms, she attributed them to her PCOS and endometriosis. However, she knew there must be another explanation when her symptoms flared during her pregnancy in 2010. Most of that year was filled with debilitating pain, migraines, unrelenting morning sickness, and both erratic heart rate and blood pressure. While she felt something was not right, her doctors dismissed it as typical pregnancy symptoms. She had a difficult nineteen-hour labor followed by several months of caring for a newborn, and trying to care for herself at the same time. By this time, she knew her symptoms were not typical of a pregnancy, nor postpartum depression, and actively began to seek answers. In the next four and a half years, she persevered in her search for answers, and saw nearly fifty doctors. Most of these doctors told her she was “too young” or “too pretty” to be so sick. Some argued her symptoms were due to the stress of being a new mom. Even some friends and professionals questioned her experiences, believing she was not sick enough to seek help. She inevitably felt some sense of defeat after years of dismissal, and it was then that a twist of fate led Claire to a diagnosis – a close friend spoke with a doctor about her case, and the doctor wanted to see Claire. During their visit he spoke the magic words that we all long to hear: “I believe you, you are not crazy, and you are not alone.” Her search continued for several more months during which time she also discovered her home was filled with black mold. She was finally diagnosed with POTS and EDS at age thirty-two. After such a long and harrowing experience, Claire was elated to have a diagnosis. She felt she could finally start treating her conditions, as well as receive belated empathy and validation from professionals. While her diagnosis was empowering and encouraging, Claire astutely articulates that we must remember that a diagnosis does not always change the way people with dysautonomia are treated. Even with a diagnosis, there is not clear and simple treatment for dysautonomia. Additionally, many professionals still do not understand the condition and, at best, provide little support while, at worst, continue to minimize and mock the experiences of patients. This roller coaster is familiar to many of us – we desperately seek answers for a smattering of life-altering symptoms. Then we finally receive them, and we are consumed by relief. However, then we must endure an entirely different emotional process of realizing the complexities of dysautonomia treatment and the lack of understanding about the condition in our society. Today, Claire still struggles with her dysautonomia. She is in her mid-thirties and uses a shower chair, walker, cane, accessible parking, and occasionally a wheelchair. She used to love camping, but has had difficulty getting outdoors even with adaptations. One of the most thought-provoking points that Claire makes is that there seems to be a stereotypical success story of individuals who are expected to “overcome” illness by running marathons and raising a lot of money. According to that stereotype, many of us feel 'less than' if we don’t reach these often unrealistic heights. I would argue that this stereotype needs to be challenged. On the contrary, Claire is a refreshing and real inspiration through her courage to share her story even when she does not feel she has fully figured out her path. She reminds us that it is human to experience hope, despair, frustration, and inspiration all at once. She shows us that it is okay to be complex because if we all fit the cliché inspiration success stories we would lose the diverse, empathetic, creative, and intuitive individuals who make up our community. I believe that many of these qualities are cultivated among individuals living with dysautonomia specifically because of the unpredictable struggles of their daily lives. Claire teaches us that being real about where we are each day is, perhaps, the most inspiring story of all. *If you would like your story to be considered for a future "Meet the Member" article, please reach out to Chelsea at chelsea.goldstein@dinet.org
  4. 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 course of antibiotics that left her with widespread nerve damage and severe disability. She began experiencing extreme dizziness, fainting, tachycardia, and sweating. She visited over fifty doctors in multiple states in pursuit of an answer. Many of the traditional medical tests, such as blood work and CT scans, came back normal, and several doctors told her that her symptoms were “all in her head” or caused by “just anxiety.” Despite these professional dismissals, Erin’s body continued to tell her something was very wrong. She followed this instinct that led her to discover dysautonomia (and DINET!), and she began to connect the dots of her symptoms. Through her own research, she identified the diagnostic criteria for dysautonomia and advocated for her own testing. An understanding neurologist respected her instincts, and testing confirmed that her symptoms were the product of dysautonomia. While six months is six months too long to seek an explanation for life-altering symptoms, we know that Erin’s diagnostic process is relatively short in the world of dysautonomia. I attribute this to her tenacity in research and fearless self-advocacy. Had she not fought for her own diagnoses and trusted her body, she may still be searching for answers and living in the psychological torment of the unknown. She advocates for improved diagnostic processes for dysautonomia. Her experience of being dismissed, adding unnecessary psychological distress to her already debilitating symptoms is still very fresh. She also calls for all of us to value those doctors who are strong listeners with open-minds. Part of Erin’s strength is being vulnerable about her struggle in the first years of living with her conditions. Prior to the swift onset of her symptoms, she was a newly-wed at the top of her field who loved to travel. Much of her identity was based on her accomplishments and go-getter mentality. She admits that she spent a couple of years grieving the loss of her old self, which impacted her mentally, emotionally, and spiritually. She had suicidal thoughts and questioned her beliefs—why do some people experience miracles and others don’t? Erin always viewed her friends as her family and then felt a distancing from many of them. She expresses some empathy toward these friends now, understanding that her disability may remind them of their own mortality. Today, Erin has bad days and better days. On days that she is bed bound, fears surface that her progressing neuropathy will cause her to lose function in some areas of her body. However, she is actively working to adjust to her new normal and seeks gratitude for the things that she has. Perhaps, most importantly, is finding forgiveness. Erin is working on forgiving the doctors who did not believe her, and she is working on forgiving herself. Like Erin, many of us internalize unnecessary self-blame -what did I do to cause this? What could I have done differently? Is it really all in my head? She is also working on finding forgiveness for her God and finding a path forward with her own spirituality. Her healthy outlook reminds her that acceptance is a process. Erin also credits the strong support she receives from her husband as central to finding her new normal. So, what can we learn from Erin? We can learn to fiercely and bravely advocate for our own bodies. We can work never to let a doctor’s credentials make us feel small. We can remember to value, and show gratitude toward the doctors and others who have helped us along the way. We can show ourselves love each day - no matter where we are in the acceptance process. In essence, Erin reminds us to be warriors who wear our battle scars proudly. At the same time, she reminds us that warriors experience incredibly challenging life circumstances, and, like true warriors, we must learn to be vulnerable about our mental, emotional, and spiritual wounds so that we can work to heal those, too.
  5. 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, preteen girl. Read the rest of Isabelle's story in the Feb 2019 edition of Dysautonomia News
  6. How to prepare for an ER trip or a visit to a new medical practice. Going to the ER or to a new doctor’s office can be a stressful experience. The obvious reason is that we are sick. Sick enough to need an ER or sick enough to need another consult. But the other more difficult reason for the stress, is the reaction we get from the medical professionals we go to for help.. The best way to help your stress level and theirs is to be prepared. Let’s face it, it can’t be easy for the ER team, the doctors and nurses to have a patient in front of them talking about illness and treatments that they know little, if anything, about. So since they can’t prepare, it falls to you. Here are some suggestions to help you get ready in advance. Long before you are in need of new services, create a medical notebook. Download one or two medical articles related to your particular form of dysautonomia, a list of ALL of your medications (even the things that don’t necessarily come by prescription, like the vitamins you take and the lemon-mint tea that helps you digest), a listing of your medical history (past and current) and at least one doctor at the center of your treatment that can fill in any blanks. It is very helpful if you can arrange an understanding with your “go-to” doctor in advance so they are willing to jump in when needed. A few cheat sheets are included with this to help you get started. Be sure to have water and a snack with you for the wait and don’t forget to bring your current meds with you. As we all know, dysautonomia symptoms do not always follow the “normal” course of accepted action and reaction. For example, in the case of certain types of dysautonomia, the standard test for dehydration may return normal levels and volume, yet if the medical team understands what to look for, they might see that the person has dangerously low levels of sodium. This is just one example, there are many more examples of vital information that can be missed because this illness does not follow the standard, expected reactions of other illnesses. Be sure to include the HR range and BP range that is “normal” for you. And this brings us to the next extremely important preparation to make before you go to the ER or to a new medical team - advocacy. You have to be ready as the patient to advocate for yourself or if you feel too sick to take on what could be an uphill battle, then prepare to bring someone with you who you trust and who understands your illness well. Understand before you even get there, that if the ER staff or new doctor and nurse you are there to consult with, are unwilling to read the articles you’ve brought with you, or to take their time going through and asking questions about your medical history, then this is not the place for you. If a new team has an uncooperative attitude from the beginning, if they are unwilling to listen and understand the information you have about this complex and unusual illness, then they are unable to treat you properly. Patient Guide - medical trips.pdf
  7. Hello all! We are looking for someone who would like to share her experiences with Dysautonomia in our next newsletter. Particularly, we would like to interview an individual who is currently going through (or just went through) the process of getting diagnosed with Dysautonomia. You do not have to be formally diagnosed to be featured in this article. We hope to share your story in an effort to connect our readers through shared experience. The process is simple, and will only take about 30 minutes of your time. Please respond below if interested and share a very quick summary (1-2 sentences) of your experience with Dysautonomia/your current stage in the diagnostic process. Thank you! Chelsea Goldstein Meet the Member Columnist
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