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    Community Voices

    How do you cope when it is ALL coming at you at once? I was once a very independent, successful, super type A, corporate America gal who was so capable. Three chronic illnesses later I am exhausted, always battling brain fog, and my past coping mechanisms no longer work. Very quickly my life has spiraled out of control & I am feeling in such utter chaos that I don’t know how to right the ship. #hopeless #needhelp

    13 people are talking about this
    Community Voices


    So today I went to my gastroenterologist and found out I need further evaluation to rule out conditions before settling on ibs and treating that with antispasmodics they said I definitely am a zebra with the complexity of issues autoimmune cardiac mental health and so forth And though I said it in jest it's actually covering up insecurities and paranoia that I'm a fraud and my illnesses are not valid despite true symptoms and extensive meducstins and hospitalizations and procedure ice come to doubt myself because of doctors initially saying fibro and myalgic encephalitis don't exist as a teenager when I just wanted to feel better regardless of it's was mind or body driven but with the schizoaffective this has be become a deep seated paranoia that my doctors are out to expose me as delusional for there own laughs reality testing tells me this isn't true but feelings hard to shake the tests are producing a lot of anxiety like are they giving me placebo is this all a test I know it's just my diseased mind conjuring up these thoughts but his do you other "mighty warriors" cope and quell the obsessive tape of uncertainty playing in your head #schizoaffective #POTS #ChronicFatigueSyndromeampME #granulomaanulare #Zebra just want be back on the Oregon coast so ill try to meditate on that to get to sleeo

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    Community Voices

    Be Fearless

    <p>Be Fearless</p>
    Community Voices

    Has anyone experienced trauma from childhood chronic illness?

    I try searching for stuff about it online, but it’s usually like how trauma can cause chronic illness. So the experience feels isolating.

    I’ve been chronically ill since the age of 5, starting with PANDAS (often called BGE). Which is basically brain damage caused by strep throat that gives me ~lovely~ mental and neurological issues.

    And, of course, in true chronic illness fashion, I have since gained more diagnoses, including PTSD.

    And I feel like the actual chronic illnesses that have plagued basically my entire life + how they (and I) were treated because of it: medical neglect, medical abuse, bullying, loss of a normal childhood, etc, has led me to develop a unique type of trauma.

    #PANDAS #PANSPANDAS #PANS #bge #Encephalitis #OCD #Tourettes #PTSD #CPTSD

    6 people are talking about this
    Community Voices

    Autoimmune encephalitis

    Anyone else have this awful disease? I feel so alone

    Abby Jenkins

    Living a Meaningful Life as a Young Person With Chronic Illness

    I am 16 years old and a junior in high school. I am also, like millions of other people living on this planet, sick. Like “20 pills a day, monthly lab work, and lots of appointments” sick. I developed multiple chronic neurological illnesses when I was in eighth grade. I live with autoimmune encephalitis, dysautonomia, Lyme, and functional neurological disorder. I was only 13 years old when I was forced to face the fragility of my own life. My health had declined so much that I was pulled out of school for months and had to give up my typical teen life that revolved around sports, friends, and school. Now, my life is centered around my health. My body most certainly has the final say in everything. I want you all to know that this isn’t a sob story. I’m not here to make you feel bad for the poor sick kid. In fact, I hope to accomplish quite the opposite. I want to share a story about finding joy and beauty in places where others see pain and suffering. I am sick, yes. But I am so much more. My life is wonderful, not in spite of this illness, but because of it. When you’re sick, people will often tell you how sorry they are that you have to live this kind of life. Although my life may be different from their own, it is anything but miserable. Oftentimes, trying to convince someone that your life isn’t full of sorrow because of your illness is a wasted effort. I still wonder why they could never see my life the way I did: as a blank canvas waiting to be turned into something beautiful. Of course, when you live with a complicated illness, hospitals and doctors’ offices become familiar spaces. Hospital life, like all of life, is filled with both joy and pain in equal measures. There are so many moments shared between loved ones and so much life that has been lived in these rooms — from late-night horror movie marathons to room service orders at 6 a.m. to being woken up in the middle of the night for vitals and IVs. There were moments of total contentment, getting to see the city lights from my room and sunrises that wash everything in a warm glow. Like all teenagers, I’ve had the lonely nights, the sleepless nights, and the stay-up-late-finishing-homework nights. Sure, there were endless tests and procedures; doctors always finding something else that was wrong with my body. But there was also laughter, those moments when we could see how wrong the world had been: A life full of sickness and suffering can be as rich as a healthy one. Something that always surprises people to hear is that my health has very little to do with my happiness. Yeah, being sick can suck (big time), but nothing is one-sided. There is beauty among the pain. When I was just shy of my 15th birthday, I started an organization to support families like mine who are affected by chronic illnesses, called Abby’s Hope Project. What started out as a side project turned into a passion for empowering and supporting both individuals and families who are facing health challenges. Some things in life are ours to choose, while other things choose us. I never chose to live this bizarre life with this illness, and I didn’t come out of a time filled with sickness and suffering to find my purpose. Yet that seems to be exactly what happened. And, of course, I wouldn’t want it any other way.

    The Skills and Lessons I've Learned Because of My Disability

    Just over a decade ago, after being hospitalized with brainstem encephalitis, I emerged from a medically induced coma with an acquired brain injury and multiple physical impairments. Like many people who become disabled as an adult, I mourned my loss of ability and independence, and wept at the unfairness of my fate. I felt frustrated with my impairments and guilty because I believed I was a burden on my loved ones. Convinced that my life would never be the same again, I resigned myself to a fruitless and miserable future. It’s true that my life was never the same again — but not in the ways I expected. As the years marched on, I adapted to my impairments and learned to navigate through the world in a wheelchair. Along the way, I developed some valuable skills and attitudes, and grew in ways I never really appreciated until recently. Patience and Tolerance I had never been a patient person. As a child, I had tantrums, slammed doors and threw things when I became frustrated. As a teenager, I was quick to pass judgment on or dismiss people I didn’t understand or relate to. As an adult, I hated any situation where I had to wait or was inconvenienced, and was often short-tempered and unkind to those “in my way.” When I fell ill and became dependent on others for my care, it was excruciating! I had no control over my environment, the people chosen to care for me, or when and how that care took place. I was completely at the mercy of someone else’s time schedule, and the waiting was often maddening. Each medical professional came with their own personality, some of which I clashed with, but had no choice but to tolerate. Coupled with emotional lability from the brain injury, my impatience was displayed in disruptive and inappropriate ways that upset everyone around me, including myself. As I moved from the hospital to rehab, to group home, and on to independent living, the frequent moments of waiting and tolerating continued. I have discovered that living with a disability in this world requires a lot of waiting (for care, for funding, for equipment, for accessibility, even for simple acknowledgment of my very presence!). As I have learned to navigate life as a disabled person over the years, my patience has increased exponentially. As a result, I am far more calm and kind to others, which improves my own happiness and sense of peace. I have also learned that living with a disability in this world often requires tolerance. I encounter ableism on a daily basis, in the form of accessibility issues, discrimination, micro-aggressions, condescension, and infantilizing. If I called it out every time, I would have no time or energy to live my life as I would like. So, I frequently tolerate these annoying moments, not because I should or I must, but because it’s simply not worth the energy. As frustrating as this can be, it has taught me how to pick my battles and not sweat the small stuff, so I may preserve my time and energy for things that are important to me. Communication and Cooperation I always felt I had excellent communication skills. I spoke and wrote clearly, and was able to explain things in a way anyone could understand. I listened to what was said before responding and paraphrased if it felt unclear. I was able to clarify a complicated concept or broaden a discussion to a larger picture. But there is nothing that will challenge one’s communication skills more than trying to instruct a stranger in providing the help one requires! I can’t tell you how many times I’ve sat in my wheelchair in a grocery store, trying to explain to someone which item I need from a high shelf. As they pointed to this item or that one, I called out directions: “The shelf above that… the one with the green label… next to that… left… no, that’s right… left… no, the green one, please.” The longer it continued, the louder and more strident I became, and the more nervous and embarrassed they became, making everyone feel awkward. There are many areas in my life where communicating clearly to have my needs met is necessary, such as bathing and dressing, locating stored items, retrieving unreachable items etc. There are also many times where I must be able to explain my needs in order to receive funding, equipment, treatment etc. Lack of clarity or errors in paperwork can result in long delays in an already time-consuming procedure, so getting it right the first time is crucial. Since becoming disabled, I have learned to clearly and calmly explain my needs, give instructions, and adapt to other people’s communication abilities. Awareness and Inclusion I am a well-educated, straight, cisgender, white woman from an intact middle-class family, and I was non-disabled for 38 years. I have enjoyed a lot of privilege in my life, and rarely spent a lot of time considering the experiences of marginalized people. When I became disabled, I became acutely aware of how differently I was treated by people, regardless of the fact that the only thing that had changed about me was my physical abilities. I learned about ableism and how it now significantly impacted my quality of life on a systemic level. I began to support disability rights, started my website and Facebook page, and pored over articles and stories about various illnesses and disabilities. I learned about intersectionality and how race, gender, age, etc. play a significant role in systemic discrimination. I learned and grew in leaps and bounds, frequently checking in on my privilege, and welcoming opportunities to expand my perspective. Because of my own personal experiences, I was able to empathize with the experiences of other marginalized groups and now see far beyond the realm of my own existence. Had it not been for my experiences with trauma, mental illness and disability, I may never have developed these valuable skills, experienced this amazing journey of self-discovery, or learned to view others with a much more kind and inclusive attitude. For that, I am forever grateful.

    Community Voices

    Hi there

    Hello, I just downloaded the app. I struggle with anxiety, depression, and insomnia. I have chronic back pain which has taken many of my outlets away. I have been diagnosed with a short term memory and a cognitive verbal disability, which stems from encephalitis meningitis.

    Most days I’m okay, but when I get into a “funk” it is hard. I just want to sleep and not get put of bed. I’m trying to embrace friendships (I don’t let many people in) that I have and allow myself to not worry about others opinions and just have some fun. I just want to live life to its fullest.

    13 people are talking about this

    What Happened When A Vaccine Hesitater Got the COVID-19 Vaccine

    December 2020 Dear Diary, A vaccine for COVID-19 is available now, but I’m not going to get it. I developed bickerstaff brainstem encephalitis (BBE, a variant of GBS ), a rare autoimmune disease, from a series of vaccines in 2009, and it almost killed me. The experience was horribly traumatizing, the rehab was excruciating, and I am permanently disabled because of it. There is no way I’m going through that again. Plus, it has been suggested that people who have had GBS should not get the vaccine. Besides, how well can we trust a new vaccine anyway? I’ll let everyone else get the vaccine, and hopefully I’ll be protected by herd immunity. January 2021 Dear Diary, Dr. Fauci and the CDC released a statement saying that the COVID-19 vaccine carries no increased risk for people who have had GBS. That’s good news, but I still won’t take the risk. I’m too scared, and it’s too soon for there to be any real data on the long term effects. Besides, mRNA technology is not new, but this is the first time it’s used in vaccines, so there is no information about rare side effects yet. February 2021 Dear Diary, Well, so far, I haven’t found any evidence of an increase in cases of GBS or any other autoimmune disorders as a result of the COVID-19 vaccine. (Although, there have been some cases of blood clots from the AstraZeneca vaccine, but it is extremely rare.) There is such little information about BBE, and the connection between vaccines and autoimmune disorders. I feel like I’m unable to make a logical, educated decision. It’s frustrating and frightening. So, I’m still not going to get the vaccine. I’m too scared to take the risk. Besides, if everyone around me gets it, I should be safe, right? March 2021 Dear Diary, I’ve been doing a lot of research in a desperate attempt to make an educated decision, rather than avoiding a decision based on fear. This pandemic just keeps dragging on, which means I’m continually at risk of getting COVID-19 . Plus, there are others to think about besides myself. As far as I can tell, there have been no rare side effects from the mRNA vaccines. The viral vector vaccines run a very small risk of blood clots. However, the chances of getting seriously ill or dying from COVID-19 are far greater than they are of developing a rare side effect from any of the vaccines. But I don’t know if that makes me feel any better. Getting the vaccine for my safety and for the safety of other people seems to make logical sense, but my traumatized “animal brain” still cowers and snaps fearfully at the idea. April 2021 Dear Diary, My physiatrist has advised me to get the vaccine. He has been with me through my entire journey since my hospitalization, and I trust him implicitly. He says that if I get COVID-19 , with my lung damage and limited lung capacity, I am at a much greater risk of developing serious complications. But he says the risk of having another adverse reaction to a vaccine is no greater for me than for anyone else, regardless of my medical history. Besides, my illnesses developed after several vaccines, not just one. He reminded me, as well, that there is no guarantee that a vaccinated individual will not still carry the virus. So, even if everyone around me is vaccinated, I’m still vulnerable. May 4, 2021 Dear Diary, My physiatrist, general practitioner and both neurologists have all recommended getting the vaccine. The COVID -19 variants are causing a stir in the medical community because they spread easier and they are more severe. My doctors are not confident that herd immunity will be achieved, and hospital ICUs are still crowded. Because I am disabled, I am fearful of ending up in the hospital with COVID -19, not just because the risk of complications is higher for me, but because ableism could put my life at risk in triage. I don’t want to continue to live in fear of this virus. Plus, vaccine passports are now required for travel and may be required for other things in the future. May 10, 2021 Dear Diary, I’ve made an appointment to get the vaccine next week. I feel like I have made a logical, educated decision but I’m nervous as hell. May 19, 2021 Dear Diary, Today was the day. Last night, I had a terrible dream in which I got the vaccine, then began developing the same symptoms that appeared a decade ago. As a gowned and gloved doctor wearing a face shield was about to intubate me I woke up, sweating, shaking and feeling like I wanted to vomit. With the help of my caregiver, I showered and dressed, then headed out for my appointment. My husband met me there, and we approached the front door. I calmly answered the volunteer’s questions, sanitized my hands and entered the building, letting my hubby lead the way. We approached a table, and I passed my paper and health care card to the volunteer sitting behind a computer, who gave me a clipboard with a form to fill out. We followed another volunteer to a gymnasium, and I was directed to park my chair in one of the dozens of partitioned spots. I filled out my form and waited, patiently calm. My husband chattered away about this and that, and I welcomed the distraction and warmth of his presence. The nurse arrived and, as I answered her questions, I suddenly began to vibrate. I glanced at my husband and he nodded and smiled reassuringly. The nurse swabbed my arm, and I tightened my bicep reflexively. “Just relax,” she said gently “It won’t hurt much.” I glanced at hubby again. He rolled his eyes and smiled. He understands that it’s not the pain that I’m afraid of. I took a deep breath, felt a small sting, then a brief warm pressure. The needle slid out and I burst into tears. My muscles liquified as tension and anxiety melted and flowed from my body in a wash of warm tears. How embarrassing. “Are you okay?” the nurse asked gently. “I’m such a baby!” I sobbed. My husband explained my reaction to the nurse, who smiled sympathetically, and advised us to wait for 15 minutes before leaving. My husband put his arm around me and whispered “It’s okay. Your tears are understandable.” As quickly as they started, the tears dried up and I waited my allotted 15 minutes listening to hubby’s distracting and comforting chatter. I suddenly felt exhausted! It’s been nine hours now, and I’m going to bed early. My arm feels like it’s been punched, I feel a bit warm and I’m very tired. Common side effects, I’ve been told. No need to worry. Besides, if I’m going to have a rare reaction like last time, I won’t see symptoms for at least a week. June 2, 2021 Dear Diary, I have been composing this final entry in my head for the last two weeks, filling out sentences with positive phrases and closing paragraphs with happy endings. An attempt to control the outcome of a situation I have no control over, I suppose. I have been acutely aware of my body and its behaviour, vigilantly watching for any sign of weakness or vision impairment. I staved off my anxiety by picturing my little immuno-army training furiously in preparation for a potential ‘Rona invasion, learning how to block, parry and destroy a ‘Rona soldier’s sticky arms. All the troops lined up in neat little rows, cooperating and communicating, no sign of mutiny or “loose cannons” going rogue. I am happy to report no adverse reactions from my first vaccine, and I am so relieved! My anxiety has disappeared, and I feel a sense of peace I haven’t felt in over a year. It feels good to know that I am protected as much as possible, that I will be able to travel and attend public events without question, that I can hug my loved ones unmasked and that I can finally kiss my husband again! Despite all that worry and fear, everything turned out fine. But, I’m not going to start gaslighting myself now by saying my fears were silly, unnecessary or unfounded. The trauma I experienced 10 years ago had a massive impact on my physical and mental health , so it’s no surprise that I still react with fear at even the remote possibility of experiencing anything like that again. Besides, those feelings were what started me on the path to doing the research I needed to make a decision that I was comfortable with. To anyone who is currently struggling with making a decision about getting the COVID-19 vaccine because of medical reasons or past trauma , I get it. You are not alone. Only you can make this decision for yourself . Do as much research as you need to, ask as many questions as you must, and make the decision you are most comfortable with. To anyone who is unable to get vaccinated for medical reasons– I, for one, have your back. I respect your right to health and safety along with everyone else’s, and will continue to wear a mask in public spaces and upon request. Hopefully, together, with a little empathy and cooperation, we can protect everyone as we strive to end this pandemic.  

    Why Guillain-Barré Syndrome Awareness Can Save Lives

    May is GBS Awareness Month. If you have never heard of this disease (and even if you have), please take this opportunity to learn more about it, and share what you’ve learned with others. It could change someone’s life. Guillain-Barré syndrome (GBS), discovered in 1916, is a rare (approx. 1 in 100,000 per year) neurological disease in which the body’s immune system attacks the nervous system by destroying the myelin sheath surrounding the nerves. This impairs the ability of signals to travel to and from the brain, resulting in multiple symptoms throughout the body, such as vision issues, difficulty swallowing, lack of coordination, and prickling/burning sensations, etc. The primary symptom is weakness, which varies in severity from mild to complete paralysis, where the individual is unable to breathe independently. It can affect anyone of any age, and it usually develops after a viral or bacterial infection. In some very rare cases, it can develop within a few weeks after immunization. Symptoms begin to appear in the lower part of the body, and work their way up to the head. Recovery may take six months to a year, and sometimes longer. Most people fully recover, but some individuals may experience permanent residual weakness or neuropathy. There are three main variants of GBS. They are all autoimmune disorders, and present with similar but slightly different symptoms: –Miller Fisher syndrome (MFS): Discovered in 1956, this rare (1-5% of GBS cases) variant is milder than GBS, and symptoms begin in the head and work their way down the body. Recovery begins 2-4 weeks after onset, and most people fully recover, but may have residual weakness. -Bickerstaff brainstem encephalitis (BBE): Discovered in 1951, this variant is extremely rare (less than 0.01 per 100,000 per year), and more severe than GBS. Symptoms usually begin in the head and work their way down the body. It is difficult to diagnose because standard tests and scans often show no abnormalities. BBE often results in an acquired brain injury, long-term impairments, and recovery may take years. –Chronic inflammatory demyelinating polyneuropathy (CIDP): Classified as a disease in 1971, it is considered the chronic counterpoint of GBS, with patients sometimes spontaneously recovering, and sometimes relapsing throughout their lifetime. There is no known cause for CIDP, but it sometimes develops in conjunction with other polyneuropathies. It is the most common treatable chronic neuropathy, but it is as rare as GBS (0.6-1.7 per 100,000 per year). It is extremely difficult to diagnose because there are no tests to definitively identify it, and the symptoms are similar to the symptoms of many other conditions. In December of 2009, after receiving a series of vaccines, I developed BBE, and was placed in a medically induced coma for six weeks. I spent 18 months in the hospital and two years in rehab, relearning everything from eating to toileting to walking. The long and difficult journey was made all the more terrifying by the lack of awareness and information about the disease. That is why I write this story now. Not to share my experience in all its horrifying detail. Not to inspire or commiserate or garner sympathy. But to help spread information and awareness so that hopefully, in the future, people who develop these diseases won’t experience what I did. When the first symptoms (blurred vision, weakness) began to appear, I visited the ER at my local hospital. The tests and scans showed no abnormalities, so I was sent home after being told to stop spending so much time on the computer. I returned half a dozen more times with new and worsening symptoms (double vision, dizziness, poor balance and coordination, difficulty swallowing). Each time, further investigation turned up nothing, and I was sent home with a new diagnosis that was, at best, an educational guess (atypical migraine) and at worst, nothing more than a blow-off (psychosomatic response because of my mental illness). The doctors doubted me, my husband began to doubt me, and I even began to doubt myself. But I intuitively knew something was wrong, I could just “feel” it, and I was becoming very worried. It wasn’t until I attended an appointment with my GP (the same one who administered the vaccinations) that the situation was taken more seriously. She sent me to a neurologist that day, who sent me to a neuro-ophthalmologist. I returned to the neurologist a couple of days later (now with one eye paralyzed and unable to swallow my own saliva), and was immediately admitted to the hospital. Over the next week, I was examined by several doctors from various disciplines, went for dozens of scans, tests, and X-rays, had countless vials of blood taken, endured two lumbar punctures and an NG tube insertion. As the results kept returning “inconclusive” or with no abnormalities, and my health continued to deteriorate, the doctors scrambled to research my symptoms and potential links. My family and I felt helpless and frightened. Nobody had ever seen this before. The neurologist suspected it was an autoimmune disorder, but with no answers from the tests or scans, and very little medical information about my specific combination of symptoms, the diagnosis was a mystery. My neurologist finally made a tentative diagnosis, an “educated guess” if you will, based on my symptoms, their progression, and the research he had done. I was given intravenous immunoglobulin (IVIg) in the hopes of slowing and reversing the disease. It was too late, however, and a few days after Christmas, I went into respiratory arrest. I was intubated, placed on a ventilator, and put in a medically induced coma. During the next six weeks, the battle was all about keeping my body alive as it struggled through multiple crises. My family waited anxiously, and rushed to the hospital each time the doctors thought I might be losing the battle. Each time they asked questions, the answers they received were vague and uncertain, inevitably followed by “we just don’t know that much about this disease.” When they were asked to sign a DNR, the doctors were unable to tell them what the “odds” were of whether I might recover and what condition I would be in if I did. It was a terrifying, heartbreaking, confusing time for my loved ones, made so much worse by the lack of information, expertise, and prognosis. When I emerged from the coma, cognitively sound but physically damaged, there were still more questions than answers. I spent the next several years puzzling and surprising doctors as I recovered in ways no one thought possible, yet not fully recovering in other areas. Today, I am disabled, I use a power wheelchair, and I live a fairly independent life in a Family Care Home (my own suite inside my caregiver’s home, where she lives with her husband and two sons). I have learned that if my symptoms were taken seriously earlier, the IVIg might have been effective in reversing the course of the disease. If I hadn’t needed to be ventilated and put in a coma, I wouldn’t have suffered so many life-threatening complications. If there was more information and awareness about GBS and its variants, the doctors may have been able to treat me sooner and more effectively. If there had been more research and case studies to reference, we may have had clearer answers and possible prognoses. If…if…if… This is why GBS awareness is so important. Awareness = Interest = Funding = Research. We cannot control whether we develop a rare disease like GBS, but with early intervention and proven treatments, we may be able to slow or reverse its course and lessen the severity. With research, we may discover new ways to detect the disease, rather than making a diagnosis (an educated guess) based on symptoms alone. With trials and case studies, we may be able to predict the short and long-term effects of the disease, and doctors may be able to give clearer answers. And all of this would mean the patient may be diagnosed and treated sooner, lessening the severity of the disease, shortening the recovery time, improving the prognosis, and easing the fear and anxiety of everyone involved. Learn more: Guillain-Barré syndrome: Miller Fisher syndrome Bickerstaff brainstem encephalitis Chronic inflammatory demyelinating polyneuropathy