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    I’m new here!

    Hi, my name is pmsmartins. I've been diagnosed with pós Covid Chronic fatigue, Ansiety, Depression, Panic disorder.

    #MightyTogether #Anxiety #Depression

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    Yo-yo dieting

    I am deafblind Asperger. I was born premature with with an under active thyroid and Asperger syndrome a minor hearing loss was detected age 4 started wearing hearing aids at age 11 and progressed to total deafness age 30. I was only relieved I could stop wearing hearing aids now because they hurt.

    I have been self harming epileptic and having mental health problems since teens. Sight problems since 17. I a m happy to be deaf blind Asperger but could do without the additional mental health issues but these things are not up to you in life I have had to learn that the hard way.

    I have been yo-yo dieting since my mid 20 when I slimmed down. I will slim then stop skimming. Get overweight and then start slimming again so I know the disadvantages of being over weight . I have tried bulimia too but for whatever reason I simply cannot do it. This is very frustrating but I guess a blessing in disguise since I have heard bulimia is very bad for you.

    Problem is since Covid I have taken to comfort eating, and I have a lot less energy which makes losing weight even harder than before and I am yet to have any success even though I am told I should lose weight or at least not donate my too small clothes to charity yet.

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    Flare up

    Hi all, Hope you had a good Thanksgiving. Today as I was preparing food to take to my neighbors, I started a huge CIDP flare, as well as asthma flare. I had my latest Covid vaccine a few weeks ago, and this has happened within a few weeks after the 3 boosters. It gets me down that I'M GETTING SICK FROM SOMETHING THAT IS SUPPOSED TO HELP ME.! I'll get through it, but it gets me down now to add prednisone, on top of being on Cellcept, IVIG every 10 days, and 15 other meds.

    Thanks for the vent. I know you all understand the frustration. Best wishes to all of you and any caregivers you have as we go into the holiday season. Take care!

    #ChronicInflammatoryDemyelinatingPolyneuropathy

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    See full photo

    Every year the day before Thanksgiving is a very important day for me …it’s the anniversary of the day I was diagnosed HIV+. 37 years ago.

    This year is very different because this month I was diagnosed that I have Parkinsonism. One of the symptoms is having balance issues but I’m stubborn and Monday I was out hiking (with my trekker poles) and I fell …hard. I had another fall a month ago. The first one I injured my shoulder but I didn’t go to PT yesterday because I felt light headed and kind of fuzzy and I have had a weird headache continually after the recent fall. It’s different than the headaches I get with the debilitating migraines I have been dealing with from Covid Long Haul. So I fear I may have a concussion. One more health problem, but it will fade. I can handle it…because I share this writing at a time when despite today’s challenges I feel very blessed because I survived so much from dealing with AIDS. PLEASE READ BELOW.

    The day before Thanksgiving this year will mark the 35 year anniversary of when I was diagnosed HIV+. Every year when this time arrives I question why I am still here. Although a part of me can celebrate my life and be so thankful every year for having another year, another month, another day still being here, I am also sometimes consumed with guilt … Survivor’s Guilt. “Why me?” Why me in an opposite sense. Not why me… why did I become HV+? But why me … why am I still here and so many others are not? I am part of a small minority who made it through the 80’s when AIDS was considered a death sentence and are still around to talk about it.

    Today many people call me a “Long Term Survivor.” They tell me that it is a miracle that I am still alive, and they honor my life and fighting spirit...but in the mid to late eighties I didn’t think of any other title than that of being HIV+. In most people’s eyes or interpretations I “had AIDS.” I had choices to make but none of them projected to the foreseeable future or even held out hope. I just developed a close knit support group of friends and family and then joined a very special group. We were a support group of HIV+ people who came together to listen, share, understand, support and love each other in a way no one outside the group could ever imagine, could ever believe… could even fathom. No one other than us could feel our pain and worry that was so thick you could feel it in the air in the rooms whenever we met.

    We talked of our fears: of death, of pain, of hurt and how some of us were dealing with loved ones who did or did not know our plight, did or did not support us. We talked of our community that so many folks in the public could never understand. Those who misunderstood us, misunderstood HIV & AIDS, and harbored fear themselves often ran from us, judged us, judged our current and past actions, judged who we lived with, who we loved with, and later who we were dying with. The MIS-understanding in the public eye was so vast, so strong and so wrong that it made living and fighting off dying with HIV even harder. To say that there was prejudice is an understatement, to say that there was hatred was a sad reality, to say that there was fear was dead on accurate… lots of fear… and most of it fear of the unknown. People partly told themselves what they wanted to hear because there were very little facts. People displayed their fear outwardly or let it fester internally, but we were the human beings living in the bubble, inside the fishbowl.
    People assumed we were all gay or drug addicts. These were obviously misconceptions sometimes, but it was so much easier for some people to pigeon hole us so that they didn’t have to include themselves, including the possibility that they too may become HIV+. There were many who even felt that we “deserved” our (possible) death sentence and were callous and cruel beyond explanation, and their feelings often spread. It was easier to fear than to accept, to hate than to love, to judge than to try to understand.

    At our meetings we shared horror stories: of families, partners and friends who turned their backs on some of us and completely walked away (in fear, anger, judgment and often just to protect themselves in their minds). We talked of some doctors in the medical field from the military to the public who saw HIV+ patients wearing yellow hazmat suits and operated inside of plastic confines to take care of their patients… out of obvious overblown fear. We talked of hospital rooms with bright neon signs at the doors of our rooms announcing our reality to all who entered – sometimes even family and/or friends who didn’t know of our diagnosis beforehand. We talked about side effects and weakness, and living while we were dying and dying to get over the pain of living. We often were outcasts and misfits if for no other reason than that it was easier to see us that way than to have to absorb the truth… and there was no one accurate truth… there still isn’t to this day.

    I am blessed to still be here today. It is easy to question why, and it can be very hard to have to process these reflections. So, the day before Thanksgiving is my anniversary. It is impossible for this holiday to come and go without my being reminded that I was diagnosed that day in 1987… 35 years ago. I later figured out that I contracted the virus in 1985...37 years ago. I am strong and vibrant today and my “numbers” are very solid. My T-cells have risen back up from the very low numbers I had in 1997 and my Viral Load dropped from the highest number the tests could determine down to undetectable 23 years ago and have stayed the same.

    Yes, I made some calculated changes as to how I was living my life and yes I have a fighting spirit, but some of it also has to just come down to luck or divine intervention, depending how you see things, which way you believe things. I think I am blessed and the God of my understanding has looked over me. Why? I am not sure. Maybe I will be able to accomplish some things, to give back, to take my experiences and by sharing them make a difference in people’s lives. Or maybe I am just still around because I have been hanging on. Today I am not sure. Today I honestly don’t know if I have to be sure. Today I am alive and in the simplest of terms, every breath is a bonus. Today I continue keeping my commitment to tell my story, to help paint a real picture that may change some viewpoints, to answer any and all questions no matter how personal they are in an attempt to be transparent, honest and true… and today I appreciate the opportunity to do so!
    So, in retrospective sadness and current pride, I look forward to this anniversary every year and want to honor the spirits of those friends who I lost from those support groups, to honor those who I never met who shared our path, to honor all those hundreds of thousands of people who died along this path right here in the United States and millions around the world. So many of them became such good friends and I mourn their loss…

    Moshe Mark Adler
    November 27, 1999
    May 24, 2021 edit

    UPDATE: In this time of Covid, sadly I recognize death tolls like those from another pandemic: AIDS (with no vaccine even after almost 40 years). I looked them up...the numbers, including current ones, are staggering:

    690,000 [500,000–970,000] people died from AIDS-related illnesses in 2019. 75.7 million [55.9 million–100 million] people have become infected with HIV since the start of the epidemic (that we know of). 32.7 million [24.8 million–42.2 million] people have died from AIDS-related illnesses since the start of the epidemic.

    #ChronicPain #PeripheralNeuropathy #BackPain #Headache #Migraine #COVID19 #covidlonghaul #Disability #MentalHealth #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder #TheMighty #MightyTogether #MightyMinute

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    Hi Mighty fam. My name is Nancy. I am 44 years old, disabled, and live and receive care and assistance with activities of daily living. I won’t go into much of the horrifying details, due to the holiday season; but I will share that isolation is taking a drastic and far too often, deadly toll on residents in nursing homes across America. I had one visitor tonight. She was told, by the nurse that she was not allowed to visit me after 6pm. ALL of our visitors who want to spend time with their loved ones in the evening hours are still being told that there is no visiting after 6. I implore you to please contact Rancho Mirage Health and Rehabilitation Center in CA, and remind them that CMS has changed its guidelines and lifted all visitation restrictions due to the drastic number of abuse, neglect, and mental health rapid decline cases that have been reported and studied. PTSD, major depressive disorders, and failure to thrive deaths are far too common and definitely avoidable, but the nursing homes do not want outsiders’ eyes and ears inside the buildings. The nursing homes and the nursing home lobbyists are continuing to use Covid as an excuse, but that is just another one of the many smoke and mirrors lies. Please connect with me, to tell me know you would be willing to stand up for me, and also assist me with giving voice to our nations most precious mature adults and dependent people who reside inside the nursing homes that continue to stay on lockdown and restrict visitation hours. I’d be grateful if you would call, email, or send letters to Rancho Mirage Health and Rehabilitation Center in Rancho Mirage, and to California Department of Public Health, and CA Riverside county Ombudsan Coordinator, OIG.HHS.GOV, and Essential Caregivers Coalition. Please help. #isolationkills #nursinghomereform

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    Musings from a Medical Nurse

    I used to love writing. It flowed just as naturally as the very act of breathing. But then COVID happened. And nursing happened – and it’s almost like the longer the pandemic dragged on, and the more tired I became, the less able I was to write. I imagine it’s due to the sheer exhaustion of nursing in a climate that is so opposed to the very fundamentals of nursing – to help, protect, and advocate for those unable to advocate for themselves. I now work on an acute medical unit – where we currently have three permanent hallway beds. The first time I had to perform a nursing procedure on a hallway patient I almost cried. I went to my charge nurse horrified at what I was about to do. I then went home, and told my partner the edited version of what ensued – keeping to myself my feelings of guilt, horror, and shame.

    Unfortunately, there were no other options. And my sweet, kind hearted charge looked at me with the biggest, saddest, brown eyes, and said “I know, I know.” I had so many idealizations going into nursing. I thought I didn’t. In fact, I adamantly opposed the very exclamations of others stating I was naïve and “fresh” – I thought I knew the horrors of healthcare from my experience as a chronically-ill patient. But I didn’t. I didn’t know the overwhelming feelings of guilt, and I most certainly wasn’t prepared for the emotional toll. I almost think my experiences as a cancer patient made the feelings of inadequacy I have as a nurse worse. I understand the fear, the overwhelming loneliness, and the hopelessness my patients feel. And in today’s nursing world, we don’t have time to address that. And we routinely leave our most vulnerable to suffer; not intentionally – but we can only be stretched so thin. I do believe I was born to be a nurse, but I would not wish this for anyone.

    It is why I will not remain a bedside nurse forever. I do not believe it is sustainable and there will be a point when I have to put myself first. And healthcare does not. The hospital does not. The world does not. That is a lesson I have learned slowly the hard way.

    Recently, I was redeployed to work in the emergency room. In many ways, the emergency zone I was assigned didn’t feel any different than my own medical unit. The stark difference was the hallway patients. The paramedics were stationed in one specific hallway, sitting with patients in stretchers who otherwise would have been left alone in the hallway. In the adjacent hallways, there were countless stretchers filled with patients left all alone. It felt like I was witnessing a battle scene, but with no winner, just casualties. And in the zone adjacent to where I was assigned, there were two patients who are burned into my mind. A mother and child.

    A young woman was holding her baby hooked up to cardiac monitors; her baby’s arm was stretched up to the sky while weakly crying. The mother was lovingly gazing down at her newborn. I was witnessing what felt like an intimate, raw moment – yet it was out in the open. I did not know what was happening, but could only fear the worst and hope for the best. The moment felt peaceful, serene – a juxtaposition to the chaos surrounding, and the scene that shortly erupted back in the zone I was assigned. Hearing the code bell, I was jolted from this almost trance, and ran back to my zone where my incredibly delirious patient was stationed directly across from my partner’s patient. An individual who was simultaneously seizing while profusely bleeding. What a contrast.

    After the chaotic storm passed, I sat down to hurriedly finish charting. I glanced at my phone. My partner was texting me to go out to dinner with his friends. I knew I’d sit there at dinner thinking about my day, unable to say anything because god forbid – what if I’m a mood kill. But that’s nursing, and in hindsight – an unhealthy relationship,

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    Another Cornish Pasty

    Went to Yoga today. Have just reheated a Cornish pasty and am eating whilst I type. Not ideal because the keyboard is getting sticky! Started editing Betha yesterday. Went Christmas shopping and ended up at my daughter’s house for coffee. Feeling positive today. Ate lots of vegetables yesterday. Did a bit of snacking which is not good but, in my defence, it was a rainy day. Woke up feeling ok despite the body pump yesterday. My arms hurt a little and I could feel my back. I always judge my health by how well I walk the dogs. I walk them for about an hour with Andrew every weekday for my daughter. It is a job that I really enjoy, and it makes me feel useful. One of the problems with having a health condition is that on bad days I feel useless. I label them as duvet days so that they seem fun but in reality, they are days when I just ‘exist’.

    I am hoping that my mission to get fitter and build up my strength will mean less duvet days. I have had both the flu and covid vaccinations so let’s hope so.

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    How We Can Defeat "Crazy Sells" Marketing Tactics

    I’ve been developing a social media content strategy as I continue to navigate the self-employed life. “Crazy sells” is the name of the game as I take notes on how other successful accounts operate. The term, of course, is a harkening to past terms.

    As such, I’ve been curious about the term ‘sex sells’ because it seems antiquated to me. It seemed to be most prevalent in the ’80s and ’90s, but I wouldn’t know how to quantify that claim. Either way, the marketing ethos in my mind is this:

    1980-1999: Sex sells
    2000-2019: Fear sells
    2020-20??: Crazy sells

    After reading an article by Alessandra Lichtenfeld, something in my brain clicked. It occurs to me that perhaps my model better applies to content strategy for media and entertainment companies. In all cases, there is a biological response. Sex sells because in the ’80s-’90s it was becoming more socially acceptable. Yet, it was controversial enough that prudes would criticize and therefor advertise for free.

    Starting around the 2000s, mainstream journalism began to utilize fear as their content strategy. I can assume it was likely after seeing the enormous gains in viewership after the terrorist attacks of 9/11. Correlating that theory with the uptick in mass shootings at schools, it was a no-brainer to shift the emotional narrative. Fast forward ten years. Alternate news media began to adopt this strategy and optimize it. All they needed to do was simply use false and/or absurd information (such as InfoWars and that ilk).

    The mainstream adoption of ‘crazy sells’
    A manifestation of that optimizing fear-based content was a new kind of content strategy — crazy. Today, the trend of crazy content continues to become more mainstream and socially accepted. Alex Jones proved the ‘crazy sells’ model with the shocking quantity of viewers and fans he acquired. Donald Trump made the model mainstream in an even more shocking election victory. Now, the rest of the opportunists are catching up with the trend in their everyday content strategy. The most recent example being Andrew Tate with his algorithmically optimized buffoonery.

    I am schizophrenic myself, and an entrepreneur with a couple of projects tied to my illness. I am very often tempted with utilizing this content strategy for myself. After all, who better to claim such a thing than someone with the doctor-verified credentials to do so?

    Thus far, I refused to do this because heavily intertwined with ‘crazy’ is misinformation. As mentioned in an earlier post, I was constantly solicited to make false claims with my Curious Markings project. Why not? It’s easily on-brand and if I didn’t tell outright lies, what’s the big deal? So I tried it out. But I measured it like a scientist would. I could not and would not move forward. The data doesn’t lie. After seeing the results of my sample pool of about 300 users, it was clear I would just be grifting.

    Finally waking up from our fear
    Rewinding back to the ‘sex sells’ strategy, I recall it falling out of vogue as it became more fake. Fake boobs, fake lips, fake love. As a western society, it got boring and superficial beyond what it already was to begin with.

    Now, we have been blessed with the misinformation tidal wave following Trump’s election and the COVID-19 Pandemic. We’ve all had some decent time to think about all of this during quarantine and came to a bipartisan conclusion. Fear is as out of vogue as sex. We all know that it exists, we all know it is making our society decadent and dysfunctional. We all want it to go away.

    But, marketers being hungry as ever for attention, something has to take fear’s place. Crazy is on the fast track to claiming the throne. I say this with as little pessimism as possible, but I believe it is inevitable. The voice of reason will continue to be drowned out. That is unless the reasonable among us can begin formulating ways of utilizing this tactic for truth and justice.

    Read the full story here: ianrandmckenzie.com/2022/10/16/crazy-sells-the-marketing-of-tomorrow

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    Semicolon

    Part 1 of 2 A semicolon.

    It is so simple yet so misunderstood. It is the most underused yet most powerful punctuation mark. A semicolon is used when an author could’ve chosen to end their sentence but chose not to. The author is you, and the sentence is your life.

    That author is me. That sentence is my life.

    In January 2011, I was diagnosed with depression. After the diagnosis, I could have ended my sentence more times than I want to admit. I remember sitting in my dorm room behind closed and locked door and looking out the window watching the other students walking to and from class and talking and laughing. I remember not having the energy or motivation to go to class because I was tired from doing nothing. I remember staying in bed being not motivated to do the simplest of tasks like getting out of bed, showering, brushing my teeth, getting dressed, or eating. I was not motivated to go the things that I loved to do like going to the gym, playing Ultimate Frisbee, running, or hanging out with friends.

    Most nights, I laid in bed staring at the ceiling with tears rolling down my cheeks. I thought that I was not good enough, I was useless, and that I was a failure. I felt hopeless and worthless. I was failing in my classes even though I loved my major of Psychology. I had thoughts of suicide almost every night. Luckily, I never acted upon these thoughts. I spoke to my psychologist every week during my time at Drew University. I ended up graduating finally in December 2016 exactly five years after I transferred there.

    I could have ended by sentence more than once while at Drew, but instead I paused it with a semicolon.

    After graduating from Drew, I thought that I had my life, depression, and occasional suicidal ideations under control. I started working in the Emergency Department at Robert Wood Johnson University Hospital in New Brunswick, NJ. There, I met some coworkers who would later become my bestest friends and my second family. We laughed and cried together, and we went out after work and on our days off. I have had thoughts of ending my sentence many times since graduating from Drew. But they were just that — thoughts — until I was in medical school from April 2019 to December 2019.

    I went to Saint James School of Medicine in Anguilla which is an island in the Caribbean about 15 to 30 minutes south of Sint Maarten by ferry. It was there where I truly had thoughts of ending my sentence almost every night. I had written a note explaining why and apologizing to my family and loved ones. I had driven to the beach almost every night and I stood on the sand. I looked up at the stars shining bright in the clear night sky. I closed my eyes and listened to the waves crashing, and I began to cry. I would fall onto the sand and cried until my friends would drive over and consoled me. Was it the stress of medical school? Was it the stress of going to medical school in the Caribbean and being so far from my family and loved ones? Was it living on my own and providing for myself with what little money I have left in my checking account?

    I could have ended my sentence so many times on that beach, but I decided to pause it with a semicolon and reach out to my closest friends for their love and support. I created a code word that I would text them or tell them, and they would know to drop everything that they were doing and come to my apartment or to that beach.

    The last two years have proven to be difficult for me and my mental health. Working in the Emergency Departments during COVID have burnt out mentally and emotionally. I am tired mentally, emotionally, and physically. Most of the time when I am tired, I am more than just tired physically. My tiredness is more than physical tiredness. I feel like I can’t continue this journey and I wanted to end my sentence so many times. The stress of working in the Emergency Department during COVID has taken its toll.

    I helped to intubate a 21-year-old patient. We pronounced so many patients especially young ones. We coded so many more who came in gasping for breath. I held the hands of patients are they died because we did not allow family to be in the Emergency Department. I held the hand of a 21- year-old as he died and then I held the hand of an 80-year-old as she died. We FaceTime their loved ones so they can see them before they died. We would call them to explain to them that their brother, sister, mother, father, grandparent, loved one would not make it, and to tell them that they would be taken off the ventilator so another person’s loved one can be placed on it. I cried more times at work than I did in the years before COVID.

    I cried in the locker room, in the break room, in the patients’ rooms as we were pronouncing and after we pronounced, and at

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    Oh- hello! So nice to see you. How are you?

    It has been…
    I don’t even have the words here.
    I’m struggling. I’m suffering.
    I rarely eat. I rarely sleep. I am dissociating and catatonic much of the day.
    I still dream of moving my body and doing crafts and socializing and laughing and playing with my fidgets and going adventuring.
    I have no security at all. In a month- I could literally be trying to sleep in my car during winter.
    I have #ChronicMigraines and need ice packs to manage them so I don’t have to go to the ER as often. I have #Agoraphobia so doing much of anything outside of a “safe place” is extremely taxing. And I have no true safe place at the moment. I have safer places. But most of my day is spent trying to meet my basic physical needs to just move. I have #ComplexPosttraumaticStressDisorder which is completely debilitating. #PanicAttacks happen so often I have lost count of how many I have. I cannot prevent them. Trying to stay in my car is going to be… well again I don’t have the words.
    I am always experiencing debilitating symptoms of several treatment resistant disorders.
    I am supposed to be receiving services through an agency but my case manager is out as usual and they haven’t even been checking in with me- let alone doing anything substantial to help. If I go somewhere else- I’ll have to wait a really long time to likely deal with the same problems during post-pandemic crisis where everyone is trying to get help. Also- my diagnoses make it unlikely to get the help I need. I “only” have #ComplexPosttraumaticStressDisorder and #Anxiety so I don’t seem like I would need case management. But I do. I got one after fighting for months. This was prior to COVID and the influx of needs/shortages of resources that resulted from the pandemic.
    I’m tired of begging for my life. And I don’t even know what I’m fighting for anymore
    Everyone says to be optimistic and hope for things to get better. But I did- for seven years. It has only gotten worse.
    I know I need to file a grievance and advocate for myself. But I’ve been doing it for so long and no one is listening anymore. It doesn’t feel like anything will be solved. There truly are some problems that don’t get solved. Not only that- fighting is really hard when you spend hours just trying will your body to move.
    And the brain fog/sensory overload/executive dysfunction/short term memory problems completely take away my ability to plan or think or problem solve.
    Christmas is a huge trigger for me during the best of times. I went to the store for groceries and dissociated and cried for four hours while in there. By myself. With no one to text or to call or to ask for help. I have tried crisis lines (and the like) but the problems are too tangled, nuanced, and overwhelming that I usually get told that they cannot help me.
    Other than my therapist, I talk to no one who has known me more than a few months. My social support has abandoned me or I realized they were too unhealthy. I feel left behind and forgotten. I cannot connect with humans anymore. No one can relate to the things I have experienced and that I am currently experiencing. People minimize my experiences. Even when they have seen how much I struggle and how much I try.
    This weekend I have been fighting intrusive thoughts relating to foreshortened future. Every morning- the first thing I do is check on my dog to make sure she is still alive. That very specific thought pops into my head immediately. If it is a day someone actually talks to me- after the exchange I have the intrusive thought that I’ll never be able to talk to them again because of how bad my symptomatology is getting and how much time passes between even just text exchanges- let alone seeing people IRL.
    It makes me feel more paralyzed. I feel trapped.
    I don’t have ways of self soothing or comforting myself that work.
    I don’t feel human.
    The people I tell this to- if I can explain it clearly- are shocked by the reality. Or I literally get told I’m not in a crisis (I think this is because I’m almost always relatively calm and rational. I may be emotional, but I’m not aggressive or even really that irritable… I mask well)
    There is so much more. I don’t know why I’m trying to explain this anymore. I just need it in a place where I can find it and I can’t really remember where I put it. So it’s safe here. I think I’m going to see if I can watch the Truman Show.
    🥳🫠🥴
    But I’m fine- how are you?