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    Community Voices

    I have BPD (Borderline Personality Disorder) G.A.D. (Anxiety) and Depression, I also have very painful Fibromyalgia, Advanced Atrial Fibrillation which has caused Congestive Heart Failure. Spine that's collapsing from the neck down, Severe Osteoporosis, the list goes on. in 2004 because of my health issues, I quite my part time job which I liked very much and dealt with taking care of my disabilities and supporting my mother as much as I had to. Mom deceased since 2009 at 85 yrs. I thought now I can concentrate on myself. Well, I did, and life has not gotten much better. I had finally gotten a decent psychiatrist, he helped me so much, but, he had a stroke poor man and had to quite his practice. The one before him was mentally ill himself yet Ontario Canada let him practice. I was trapped in his office door way being told with witnesses around.. I would leave with all his problems get home and binge...om horrible. Now my health is bad, despite trying to walk.. water on the knee and spine and joint and fibro and gastric and heart...all too much. Always fatigued. Now my sister whose hubby is very sick is dumping all her BPD and his illness on me. I know I can't turn my back, but, what about me, I have to plead my own case where i live to get City support to stay clean. yet they say You are not sick enough for a nursing home, I have always suspected I've had PTSD not war zone type but bad enough. How do I find myself, I pushed myself to be normal yesterday and now ive crashed again. it even hurts to type and my shower person the government provides has cancelled out today. People are afraid of my verbal temper, I never threaten harm...just very loud and angry when I see and injustice. Now I have my landlord's worker terrified of me...you can see it in her body language, even though I never threatened her... I was just angry and mouthing off loudly, didn't even swear last spring. We have sicker Paranoid Schizophenic in here threatening to slice people apart. I take my meds as per doctors. but no verbal therapy. so lonely, supporting sister with BPD EVERY DAY on telephone. WHY is it, some of us, help till be can't anymore and then when we need help...oh sorry I can't do it. I don't understand.

    2 people are talking about this
    Natalie Bograd

    Finding Hope in Life as a 'Generation Disaster' Millennial During Tragic World Events

    I’m lying on the couch listening to the icy February rain slide down my living room window. Dizzy, nauseated, and experiencing severe migraine, I can’t concentrate on anything other than my excruciating pain. It feels like ice picks are digging behind my eye sockets and my entire head is being squeezed in an unrelenting vice grip. The only thoughts that penetrate the fog of illness are half-formed and terrifying. Maybe I should go to the emergency room. Will that make the migraine worse? Will they believe me, or will think I’m seeking drugs? Should I go alone or make my partner come with me? What if we both get COVID-19 at the hospital? Do I already have COVID-19? Am I dying? Would it be better if I died? Will this last forever? It’s definitely a tumor. I’m just being a baby. Should I call my mom? Take another pill? It’s definitely an inoperable brain tumor. I don’t want to die, but I’m not sure I want to live. I turn my head and for a split second, I focus on the view of our tiny Brooklyn backyard. Suddenly, I catch a flash of scarlet under the dripping trees. It’s a single cardinal with his unmistakable crimson crown and wings — seeking respite from the storm under our mulberry tree. I’d seen cardinals in our yard before — but only in summer. In 2020, during the height of pandemic isolation, I thought the cardinals were good omens. Messengers of hope from a benevolent universe, perhaps signs of better times ahead. My mom uses the phrase “a perfect storm” to describe those moments in life when multiple unexpected traumatic events occur in seemingly spontaneous succession. I don’t know how this term came to be. Perhaps it exists because we rarely see storms as bringing anything but chaos and pain. We can’t think of a storm as “perfect” in a good way. We rarely greet an oncoming storm with excitement or delight. We are primed for devastation, attuned to catastrophe. I recently read a piece in which one of my favorite contemporary writers, Anne Helen Petersen, interviewed Karla Vermeulen about her book, “Generation Disaster.” The book describes the unique collective trauma experienced by Americans born between 1989 and 2001. Our adolescence and young adulthood was punctuated by 9/11, mass shootings, increasingly terrifying reports about climate change, the war in Afghanistan, an economic recession that just about destroyed the economy, and deep, perpetual political strife and social upheaval. In other words, we grew up at the mouth of the volcano — with waves of molten lava lapping at our feet. I’ve seen this instability manifest in my own life in various ways. When my older sister was a freshman in high school, the news of a mass shooting at nearby Columbine High School rocked my hometown. Two years later, we watched the Twin Towers fall. Suddenly, we were all but strip-searched in order to board a plane. It became clear that most of us would never live as safe or as well as our parents did. And yet, in all my youthful naivete, I started my higher education career at a private college in Los Angeles with a price tag so shocking that the financial aid I received barely made a dent. I had undiagnosed attention-deficit hyperactivity disorder (ADHD) and no idea that I wasn’t ready for college — let alone in a huge, unnavigable city far from my close-knit family. I arrived to find that — despite the astounding tuition — my freshman class was overenrolled, and several of the 1970s-era dorms were closed for remodeling. So my entire cohort was housed in forced triples — double rooms with an extra bed and desk squeezed into eight-foot by 10-foot rooms. To add insult to injury, the administration also decided to deliver us three sets of furniture — three desks, three impractically large, heavy dressers with granite tops, and the requisite mini-fridge. One of my first nights on campus, the air conditioning in our dorm broke. I had attended an all-girls high school and barely dated — I had never even gone beyond a peck on the lips with a boy. Suddenly, boys and girls were walking around half-naked and sleeping on the floor of the library next to total strangers. I was unprepared to make my own decisions about whether or not to attend class, what to eat, which romantic encounters would end in heartbreak. A few months into that first year, I started having severe panic attacks and experienced my first major depressive episode. My dad had to rescue me from Los Angeles, packing my things as I lay on the floor, convinced my racing heart and shortness of breath indicated some grave medical condition. On the plane home, I heard voices telling me I was going to die. Without my family’s quick response — finding me a therapist and getting me the treatment I needed — I’m fairly sure I would have. Six months later, after moving back home and attending community college, I was finally stable enough to start again at a public university 30 minutes from home. And yet, stability was not on the horizon. Though I graduated in four years, earned honors for my academics, held down a part-time job, and enjoyed a few friendships, I also struggled deeply with depression and anxiety that I now know was partially a result of my undiagnosed ADHD. I now recognize the impulsive behavior — experimenting with the wrong boys, drinking too much, dropping classes, lying to my parents — and the struggles with executive functioning that still affect me as an adult. There were fender benders, detonated friendships, roommates furious with my lack of cleanliness, drunken declarations of love to undeserving boys. But more difficult than all of this was the sense that I didn’t quite fit anywhere — that maybe I was irreversibly and fundamentally “broken.” Between graduating college with honors in 2011 and moving to New York in 2019, I had at least 11 jobs — including serving in Americorps, teaching middle school English, and bagging groceries at Whole Foods. I had a series of bad roommates and moved back in with my parents for the second and third times. I had complicated romantic relationships with men who were patently unsuited for me. I excelled in a master’s program in media studies but became bored and decided not to go for a doctorate, essentially cutting off a career path in academia. Just before I decided to move to New York and just after my ADHD diagnosis, I finally confessed to my parents that I had over $10,000 in credit card debt on top of my $70,000 in student loans. At age 29, after working without a break for almost a decade, I had no partner, no friends, no career, and no savings. I was — in the most literal sense — worthless. And yet, I plunged ahead like the cardinal, seeking shelter and a place to nest. I used the money my parents had set aside for my future wedding to pay off credit card debt, sold my car, and moved to Brooklyn with a part-time job, an offer to crash with a friend, and an incredibly risky belief that things would get better. They did and they have. I fell in love. I moved in with my boyfriend. I worked through some core issues in therapy. I secured a series of higher-paying jobs in my field. But then, COVID-19 hit. It was the perfect storm. Isolation, fear, the relentless drumbeat of capitalism undaunted. The reasons I moved to New York vanished overnight as restaurants shuttered, theaters went dark, and ambulances wailed. The pandemic stretched on for months. Months turned into years. Armed terrorists stormed our nation’s capital. States passed and courts affirmed more and more bills attacking abortion rights, voting rights, and the right to gender-affirming care. My partner and I had very few friends nearby, no family, and no “pandemic pod” with whom to weather the storm. We were an island unto ourselves — huddling together as the rain lashed at our windows and the waves crashed. We worked. We stared at screens. We drank. We missed family Christmases and baby showers. We stood in line for COVID-19 tests and vaccines and masks and groceries. We found pockets of joy and laughter and peace. The world opened again, then shuttered, then reopened again — a dizzying dance of changing guidelines and social expectations. I started having five migraines a month, then 10, then more. I had finally established myself in a life I loved — only to find out at sea once again. It’s not that no other generation in history has grown up during dark times. I appreciated the Apple TV series “Dickinson” — a fictionalized dramedy about the poet Emily Dickinson — for the way it gently pokes fun at how young people whine about living in “unprecedented times.” In one episode, Emily’s sister, Lavinia, whines, “The Civil War ruins everything!” Today, she would no doubt post her frustration as a snarky Instagram meme. But the outrage is the same. The systems that were meant to help us have failed, the promise of a good job and home ownership with a college degree have been rendered meaningless, and young people full of promise have been lost to racial violence, mass shootings, a pandemic, endless war, and environmental ruin. But as Vermeulen remarked in “Generation Disaster,” the point isn’t that no past generation has had it harder than millennials. The difference, perhaps, is that millennials have never seen the world as safe or believed on a deeper level that we’d be rewarded in the same way as our parents have been for pursuing the things they pursued — marriage, a stable career, higher education, home ownership, or parenting. Though I may be generationally primed for disaster — especially on a national or global scale — it’s always the personal catastrophes that take me by surprise. I’m someone who lives with ADHD, anxiety, depression, and chronic migraine. These are storms I know — biological forces with which I’m intimately familiar. Though they can be dormant for weeks or months, they’re never far from the horizon. And yet, they sometimes take me by surprise — leaving me breathless and gasping in the wreckage. This February, migraine was a storm I didn’t expect. The pain, the fear, the sense of residing in a space somewhere between life and death, between illness and health, completely cut off from the world. I eventually ended up in the emergency room after a night spent weeping in pain and asking my partner to tell me stories to distract me from the sense of impending doom — the certainty that my life was about to end. I wasn’t sure I minded. The ER doctors drew my blood, gave me various medications and fluids, and ran a series of tests. A scan of my brain came back clear. No tumor. I didn’t have COVID-19 either. It was “just migraine.” As the treatment started to work and the pain receded, I lay on my back with an IV in my arm, and I was overcome by a sudden sense of peace. I realized immediately and forcefully that this moment, this imperfect storm, would abate. I would live. I would hold my nephews’ small hands and stroke my dog’s fur. I would stand by the ocean and marvel at it. I would be a part of the world again — for as long as luck and grace decreed. But just as deeply as I knew I would again experience great love and joy, I also knew that sorrow, pain, and terror were not finished with me. The world was still broken. This moment of respite was the cardinal in the storm — a flash of crimson on a gray winter day. A little over a month later, I stood with my toes in the sand looking out at the ocean. I was visiting Sanibel Island, Florida with a dear friend and her family. It was the most beautiful place I’d ever seen: pristine beaches with white sand and teal waters, a wildlife refuge where we watched great blue herons and egrets soar over a bay where dolphins and manatees played. We kayaked through clusters of mangroves, combed the beach for seashells, and watched the sun set in blazes of orange and peach. But looming in the background was disaster. My friend’s grandfather was glued to the rental home’s television for hours each day — watching the coverage of the invasion of Ukraine. Just before we set out for a bike ride through the nature preserve where we’d see roseate spoonbills, sea turtles and an alligator, we watched Ukraine’s president, Volodymyr Zelenskyy, address Congress. He played a video that depicted daily life in Ukraine before and during the Russian invasion. Much like the American disasters he referenced in his speech — Pearl Harbor and 9/11 — the video showed ordinary days with blue skies and laughing children turned to horrific blood and rubble. It was strange for me to be in such a beautiful place while other parts of the world were burning. Or maybe it wasn’t strange at all. And so I thought again of the cardinal. The one I saw when I was sick was different. It was a quick flash of light in the darkness — transient and ephemeral. It represented the single hour or week or month or year that happens to be free from pain, fear, and grief. It was the brief calm after the storm — not its permanent cessation. As part of “Generation Disaster,” I realized that these moments between storms were the times when joy and peace can enter a life and take root. After all, every life has two surfaces: one shiny and unbroken, the other troubled and crumbling. Generation Disaster. Generation Resilience. The eye of the storm — and its apex. I wanted to tell the sick, exhausted, broken version of myself staring out at the rain and hoping to die to hang on just a little longer. Things don’t always get better, but they always, always change. And with change comes promise. The cardinal was a reminder that we don’t stay alive because we’re guaranteed endless sunny days. We stay alive — we choose to keep living — because if we don’t, we may miss those moments when our very cells sing with gratitude for every breath, every kiss, every heartbeat. We often endure because we hope that when the storm returns — and it will return — we will be wiser, stronger, and better equipped. We may hope we’ll have deeper roots and sturdier branches. We may hope that when the final storm comes for us, we can say that we did the best we could — despite the gale-force winds and raging waters. We hope to say that in the storms, we were broken and alive and perfect.

    Community Voices
    4cah

    I had my first seizure

    Had my first seizure 2 weeks ago. it was probably one of the scariest things i've experienced, but not because of how it felt; I think it was because I had never experienced it before. I felt this sense of euphoria and dizziness at the same time, and i didn't know what was happening at first. I couldn't speak. I couldn't move. Then all of a sudden I felt my face muscles shift, and I was incapable of changing it for a minute. Then I was blacking in and out for a while. It took a while for me to gain the ability to speak and remember what I wanted to say, but I eventually got there. felt like I was going to lose the ability to speak. My grandfather had a stroke and now can no longer speak properly and I know a stroke and a seizure are different but you don't tend to think so rationally as it's happening. I cried the entire way to the hospital. Luckily I had great friends and an even greater Mom who flew out to make sure I was taken care of.

    1 person is talking about this
    Community Voices

    Funny interaction

    Dealing with the medicaid office can be stressful. I had to call them for the first time in my life but certainly won't be the last, but I thought I would share a little snippet of the conversation to bring a little bit of joy, cause I sure giggled about it later:

    Worker: are you disabled?

    Me: yes.

    Worker: How long have you been disabled?

    Me: since birth.

    Worker: *shocked* excuse me? Since birth?

    Me: *confused by reaction* yes. Since birth

    This was genuine shock, the worker wasn't trying to be mean or judgemental. You would have thought that she never met someone that was born with their disability... Maybe she hadn't. Maybe she was surprised how calm and matter of fact I was and not shy about it. I don't shy away from facts. Still, the experience of it was so funny to me. I hope it brought a little bit of a smile to your face
    #CentersForMedicareAndMedicaid #Disability #MentalHealth #HealthInsurance #funny #cerebalpalsy #Stroke #PediatricStroke

    3 people are talking about this
    Community Voices

    Panic SOS

    I’ve been having obsessive thoughts. They are giving me panic attacks. I feel like I’m passing out or going crazy! I’m scared. 😭 # panic attacks #Depression #PTSD #Stroke #OCD

    6 people are talking about this
    Community Voices

    With the fall and change in the weather I have now discovered a new symptom… not just heat sensitive but also cold intolerant. Day time when it’s warm outside my body temp is pushing 100 and at night when it cools off outside it drops to 96.8. I know that doesn’t seem like a lot to some of you but as far as core body temp goes that’s almost pushing extreme fluctuations. Oh the joys of illness. This is gonna suck. And it’s not even COLD yet. Heat stroke to hypothermia. Here goes nothing!!

    2 people are talking about this
    Community Voices

    I just wish people wouldn’t blow me off. Or act like my feelings are too big. Or get so uncomfortable when I try express what I am going through that they get off the phone or rush the conversation. I get it’s uncomfortable, unpleasant, scary, taboo. Whatever word you want. But it is happening and it is happening to me. I need my people. They act like they can’t handle it but what about me? They may say sound selfish. But sorry your feelings are uncomfortable but I am planning my funeral so my parents know my wishes should that happen. Like get a backbone and be there!

    Friend: some people can’t handle death… they can’t comprehend it.

    I can’t either so it is frustrating when trying to process and people are like I don’t this well. Well **** you! I need my people. That is my biggest fear about dying. Not having my people, being without my twin, who will comfort mom who is having a nervous break down, who will take care of dad while he is aging, who will be there to hug me in the darkness? And the darkness isn’t here yet and I am already alone…

    #gastroparsis #COVID #longcovid #longhauler #Stroke #Seizures #Dystonia #scared #darkness #TooBig #valid #IamVaild #Twin #DoNoLeaveMe #help

    Community Voices

    Long covid is killing me….

    I just wish people wouldn’t blow me off. Or act like my feelings are too big. Or get so uncomfortable when I try express what I am going through that they get off the phone or rush the conversation. I get it’s uncomfortable, unpleasant, scary, taboo. Whatever word you want. But it is happening and it is happening to me. I need my people. They act like they can’t handle it but what about me? They may say sound selfish. But sorry your feelings are uncomfortable but I am planning my funeral so my parents know my wishes should that happen. Like get a backbone and be there!

    Friend: some people can’t handle death… they can’t comprehend it.

    I can’t either so it is frustrating when trying to process and people are like I don’t this well. Well fuck you! I need my people. That is my biggest fear about dying. Not having my people, being without my twin, who will comfort mom who is having a nervous break down, who will take care of dad while he is aging, who will be there to hug me in the darkness? And the darkness isn’t here yet and I am already alone…

    #Gastroperasis #COVID #longcovid #longhauler #Stroke #Dystonia #Seizures #tubie #PegTube #StarvingToDeath #IronDisorder #ImmuneDeficient #Death #FinalWishes #darkness #BigFeelings #TooBig #iamvalid #valid #LeftBehind #DoNoLeave #Twin

    14 people are talking about this
    Community Voices

    How do you bring yourself to dill out an end of life packet?

    I got mine in the mail yesterday just in case I turn critical before I can get to an out of state hospital with a specialist…. I got COVID in May and developed QT Long Syndrome so all psych meds stopped, except Elavil. June I had a stroke that left me weak on one side, not able to write or speak properly, or even more around well. Few weeks later I had a Dystonia episode that almost killed me. Elavil was stopped. My Gastroparesis was continually getting worse since COVID and because my heart meds are not option at this point. I now I have a PEG tube but still pleasure eat some. In two weeks I will be getting a PEG-J to completely by pass my stomach. I am in the hospital more than I am home so it feels like it. All I do is sleep. Life is hard and a long life just isn’t the cards anymore. My end of life packet came in the mail yesterday. Five Wishes. This is my PARENTS know my final wishes and planning a memorial service. It seems so backwards. I am only 33…. How did I reach this point? What did I do or not do? How in the world can I fix this when my state won’t even help me?! No idea how long I have to wait for Houston but my body is giving up and I am afraid I won’t make it to that appt. But I cannot bring myself to fill out this packet. Feels like giving up but my parents need to know these things….. #Gastroparesis #FeedingTube #CriticalCare #scared #how #why #doesitgetbetter #endoflife #longcovid #Stroke #LongQTsyndrome #HeartHealth #MajorDepression #Schizophrenia #Schizophrenic #Anxiety #PTSD #MedicalPtsd