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    Community Voices

    In medical limbo

    Had an EEG last Thursday. Reason is falls & other symptoms. I know the results can help diagnose dementia , brain tumors & dementia along with other things. My brother died from a brain tumor last month, seizures would mean no driving & loss of independence. Dementia is the most terrifying. I will stockpile meds if I have this. I’ve seen it play out, not for me
    #Waiting anxiously

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    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

    When hydrotherapy takes you into a 6 hour E.R. visit! Yep, no more therapy in heated water.

    So, my hydrotherapy that I wanted so long turned out to be a bit of a physical nightmare. I think I had 6 sessions so far. Five in the heated tank and one I pushed them for when the heat wasn’t working (cold) water. Yes, the cold was the best for my body as I thought it would be. Out of six sessions. Fifty percent of them I went in on a rollator/cane and came out the same way. Fifty percent of them left me unable to walk at all and required a wheelchair to leave. Two times while in the tank my body went into major immediate symptoms that required the tank to be drained and getting me out right now. Last week, my session ended abruptly requiring the therapist to call for help and a wheelchair to get me to the emergency room immediately. Six hours later I was on my way home.

    The bad news: Each hydrotherapy session in heated water quite literally felt like it tortured my body. Not just for the session but for the rest of the day and two to three days afterwards. Then, it was time to go again and do it all over. I’ve been telling my neurologist for the entire time that my body is suffering immensely with heat/humidity!! I KNOW. I know because I live in a home without a/c or central air, and the summer’s that I’ve lived for my whole life are now intolerable in every way. Why is my voice not heard?

    The good news: I don’t have a brain tumor (they did a ct scan), not that I thought I did. I didn’t have a stroke.

    The e.r. Dept wants the doc to continue looking at ms and autoimmune illnesses. She also said that the spine stimulator in my body that I’m currently not using NEEDS to be removed. I’ve nobody to do that and who’s going to pay for it?

    Now, the therapy department informed me that they will not allow me to continue hydrotherapy at all. They believe that something is attacking my nerves. Umm 🤔 yes, I believe that as well! I feel like my doc does not listen to me at all.

    It’s all ground or machine therapy from here on out. This will be so challenging as well seeing how my body can only walk 15-20 minutes max before my feet fold under, the numbness, pain and burning take over 2/3 of my body and I become unable to walk no matter if I’m using a rollator or not. I keep having vision episodes, facial numbing, head tingling and on and in it goes, along with limbs full of numbness and weakness the pain is severe and it is daily.

    Today, I’ve therapy in the afternoon, then it’s my sleep deprived eeg in the morning. Wow, what fun I’m going to have in the next 24 hours (my body), NOT! How I’m going to stay awake is the question of the day? Oh hell. 😬 Wish me luck you beautiful people!💕
    #MightyTogether #Undiagnosed #CheckInWithMe #MultipleHealthChallenges

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    Community Voices

    Totally confused

    #PseudotumorCerebri . I was diagnosed a month ago and boy has it been miserable. However they didn’t exactly tell me what it is just that fluid builds up creating pressure. One if my friends says it’s like having a brain tumor without the tumor. Which I can believe. So can someone explain what this is to me please.

    Amanda Van Eps

    Patient Management and Consent in a Post-Roe Era

    I was diagnosed with a brain tumor in 2020 as an incidental finding after a routine MRI for migraines during the height of the pandemic. This was not my first diagnosis with a chronic or invisible illness, but proved to be an annoying diagnosis. I say this because it came with more questions than answers. Until you have the tumor removed or biopsied, there is no way to be 100% sure exactly what it is beyond the educated guesses of your amazing medical team. In what I thought would be unrelated, I had an IUD eject itself a month or so prior to finding the tumor, so I was in the market for a new form of protection and menstrual control. Because I also have POTS, birth control has been extremely helpful in controlling some related blood pressure and migraine symptoms. While updating my OBGYN provider to get a new IUD, I was refused until I received clearance from my neurologist. The reasoning was that the hormones from birth control may or may not worsen the status of the tumor. Now while I agree it is the provider’s job to inform the patient, the patient’s consent is the only consent that matters. As if I didn’t understand the repercussions when the duality of the hormones from an unwanted pregnancy wouldn’t be just as precarious, but obviously more so. My medical history is complex and nuanced and that IUD helps manage other conditions I must deal with on a daily basis. I did not have the luxury of just managing the tumor and leaving other conditions and their symptoms to be reactive. I wrote my neurologist a light, but snarky email about how I’d rather be afflicted by the hormones of birth control than those of an unwanted pregnancy. His office faxed a letter to my OBGYN to clear me for my IUD, but the fact I had to ask him for birth control sits oddly to this day. I share my story because we are now in a post-Roe climate where patient autonomy, needs, and consent are often secondary to blanketed thought. Thirty-eight percent of American women face one or more chronic illnesses. The symptomatic nuance chronic illness places on childbearing years will never see the inside of a courtroom because justices are not qualified physicians. These blanket bans by the states will never know how to regulate exceptions, acknowledge women as whole patients, or address their patient outcomes. Now that the Supreme Court has asserted that all uterus-bearing patients no longer have the right to privacy, there is no longer a threshold or standard for patient care independent of a state’s belief systems. Risk assessments are no longer the choice of just the patient, depending on your location. Where does this leave an already complicated relationship between physicians, their patients, and the conditions they’ve vowed to treat?

    Community Voices

    I’m new here!

    Hi, my name is mzjan. I'm here because I have Bipolar with a Brain Tumor twist.

    2 people are talking about this
    Community Voices

    Physical pains

    Was just wondering if this happens to anyone else . If I get a headache I think I’m dying or have a brain tumor or an aneurysm, etc. if I get pain in my legs I think it’s a blood clot or something severe. Every pain I get I think I’m dying and it’s so bad I just lose it and call my mom who just says you’re not dying . And my boyfriend says I think If you were really dying you wouldn’t know. Well , these things aren’t helping me. I think I’m dying pretty much every day and it’s scary. My doctor , he just says this is normal with anxiety. This is no life to live. I’m not living if I feel like I’m always dying. I need help .

    11 people are talking about this
    Community Voices
    Community Voices

    Thought for the day

    <p>Thought for the day</p>
    15 people are talking about this
    Community Voices

    New and wanted to share

    Introduction #chronic pain #multiplesclerosis #diabetes #internalpressure #fibromyalgia #depression #braintumor #meditation #migraines #inoperabletumorspinalcord #neuropathy #herniateddisks #lost #ready to give up.

    My name is Kathleen and I am 57 years old.
    I was sexually, emotionally and physically abused for the first 32 years of my life.
    2010 Had surgery and follow up treatments to remove a brain tumor on my pineal gland.
    In 2012 I was diagnosed with multiple sclerosis and various other Neurological disorders and put on Fentanyl and Oxy for pain for over eight years.
    In 2021 I was tired of being in wheelchair and laying in bed 20 out of 24 hours a day for years. So I decided to get off all the narcotics. And went into a hospital to do so.
    And then discovered that my neuropathy had gotten worse and that my spine had herniated discs as well as a tumor on my spinal cord. I have trouble walking, and I fall a great deal. But I refuse to go back into a wheelchair or to hide in my bed anymore.
    Seriously sleep disorders, I have slept less than four hours a night for the past 16 months.
    So I have been on a new path to try and discover the universe within me. I’ve done meditation for over 159 days and while I find that comforting at times I have not been able to relieve the chronic pain and internal pressure that I feel in my torso, head, and back.
    I have not given up though it is hard to live life. I am ready for the next transition whenever that might come. But I guess I’m reaching out so that I can connect and keep on going.

    11 people are talking about this