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some shocking facts on long-covid that aren't widely talked about

-Nearly four years after the first cases of an unusual pneumonia appeared in Wuhan in December 2019, nearly 7 million people have lost their lives due to covid, and some 65 million more continue to struggle with the infection’s mystery aftermath, a poorly understood syndrome known as long covid

- Dr. Jamie explains that covid is now labeled by health professionals as an autoimmune-inducing virus, along with Epstein barr and herpes type 6.

-The National Institute Of Health performed autopsies on more than 44 persons who died from COVID-19 and it was shown that these people not only had COVID-19 in their airways but all throughout their bodies. The samples revealed COVID-19 in almost every organ and organ system of their bodies, including their skin, eyes, stomachs, muscle, fat, glands, and even in six different parts of their brains. These details and reports are a key indicator of how COVID is not simply a respiratory disease, but rather it can affect all the inner creases and crevices of every muscle group.

-The insufficient awareness and understanding of long covid, both within the medical community and among the general public, pose many significant challenges for individuals experiencing persistent symptoms after contracting covid. Many people suffering from long covid told their stories in a buzzfeed article, and some of them left me shocked. A notable case was a 48 year old female named Heidi Farner, who caught an asymptomatic case of covid, and weeks later she developed a parkinson like hand tremor. This hand tremor went on and greatly affected her ability to sleep. Her symptoms were pushed aside and she was denied a diagnosis by doctors time and time again. It was noted that she told her husband things would never get better, and no one will listen, and she ended up taking her own life after a 13-month battle with long covid.

-Covid itself changes basically the entire makeup of your cells, ranging from cells in your esophagus, to your intestines to your skin. This can cause detrimental and long term damage that cannot be easily reversed.

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Just three words

Three words that's all it took, three. And truth is they keep changing:
I am sorry
I am sorry for the sounds, that continue to disrupt your afternoon. I am sorry for the screams you may hear when I'm locked into a spasm. I am sorry for the grimace, it's not you, I swear. For my arm locking up, or outrageously moving from a tremor. And now it's become almost a ritual at this point, half-way through a grocery run I can feel my body do a jig with the cart. All the while lying point blank to my husband that I am fine. He sees the stressors, he knows I'm lying. But I hate that walk back, that feeling of defeat as I Igor-walk back out to the car. It's a wierd feeling of complete vulnerability of feeling like I arrived at school naked. And all I can see are people watching this wierd act of what once was an artist, a poet, a novelist. Well, I know they aren't really looking. And that I probably don't take up a miniscule of brain matter. But that anxiety is present all the time, everyday. Maybe I'm a narcissist.

I am sorry for that annoying scrape sound you might hear. That sound of shoe (or in my case slipper, cause sneakers can't easily slide) rubbing the asphalt of the parking lot. I promise, I hate it just as much as you do. It is the strangest feeling and extremely sobering to witness your self-decline. And since this has started I have slowly felt myself dwindle. The self I spent thirty-six years working on. What I once knew so well, completely altered and all I can do is watch/feel it happen. I am sorry for the bags under my eyes. I don't sleep through most nights. Something is always waking me up. Sometimes I will let the weight of my eyelids win and the sleep will fall over me like confetti or glitter. Sometimes I let the sleep win.

I feel guilty:
Three words that's all it took, I feel guilty for making my husband have to take so many extra steps just to meet me halfway. I feel guilty for tricking him, I am so different from when we first met. It's all been different since the symptoms started showing. But no matter when or where I am the soft assurance of his voice has never changed. He is continuously in my corner, fighting for me. I feel guilty for making my family worry, for getting angry at my mom because she refuses to believe. I can't blame her for pushing it to be something else, I'm her daughter. I feel guilty for causing my beautiful niece to hesitate in my presence. For exposing her to a spasm or tremor or an uncontrollable facial tic. I don't ever want to frighten or scare her.

I feel guilty for not taking advantage prior to this diagnosis. For not enjoying the smaller things as much. A good night of sleep, a walk, exercise, for when it came easier. There are so many other words I could use to describe this event, to describe the depression and confusion. But I'll use just three more right now:

I have Parkinson's.

#BipolarDepression #MentalHealth

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"Wiggle your big toe" health article

Sometimes when I enter my kitchen I want to scream. And it's not because of the Mylanta green paint job of the cabinets. (That was my previous place) Imagine standing still for a second, hands at your sides. You can feel the air moving past you. You feel strong, sturdy, and then you step forward. Foot picking up, surging through that same air and landing on the floor. It was just a step, no big deal. Right? Now to the point of screaming: imagine you go to move your foot again, but nothing happens. It's jarring at first, how your brain isn't connecting with your leg. You look down at your limbs those appendages you've had all your life. Suddenly you've taken for granted the will power you have. Never having to think or worry about something as simple as a step. Well, at least I never did until I was standing in my kitchen trying to walk and unable to move my legs at will. Finally after a few seconds of coaxing, my foot picked up in a rigid and clumsy manner. But it was a step forward. I tried to regain my balance, my eyes focusing on the kitchen tile. This is so stupid, I remember thinking, just walk Audrey. I moved my other leg, or so I thought it. After a few seconds it moved. I did this so many times in the day. It was so miniscule but the impact it made was devastating. I kept thinking move, just take a step. But then I didn't and I couldn't understand why.

I turned thirty-six years old this year. In a nest of dark brown hair, the few whites I have developed stick out. In all honesty, I am not quite certain how I am supposed to feel at this age. Am I supposed to feel the grievances of age? Am I too young? Truth is, I never planned on living this long, but here I am. Eyes bulging from my sockets as I stare at the kitchen floor. In those moments, I had more drive and desire that not even the little stains and spots could have distracted me. A small ball of dog fir blew across the linoleum like a tumbweed during the pivotal shootout in a western. I could hear the soft coaching of my husband as his grip tightened to keep me from stumbling. It's just a step, I pled. My foot rising up off the floor and down as I moved. I wanted to apologize to him, to tell him how sorry I was for tricking him. I felt so guilty. So different from when we first met. It's all been different since the symptoms started showing. But no matter when or where I am the soft assurance of his voice has never changed. He is continuously in my corner, fighting for me. From the troubled kitchen walks to the dystonia and spasms. He is there trying to pull me from a body I've lost complete control over. Lying on my bed, awake, and of sound mind, all of my senses are working. But suddenly I cannot move my body. I can grasp that time has changed, I can hear summer at my windows, the birds tweeting, I can smell the Gardena near the back door. I am functioning in every way possible except I can't physically move. Is there a word for this that conveys the fear, the uncertainty, and the depression I feel? Petrified? Panicked? That's how this disease or illness has made me feel. And I am petrified because there's nothing I can seemingly do to stop it. In the calm moments after I have regained my mobility, my mind wanders toward a sliver of hope. Hope that the Audrey prior to Long Covid is still a possibility. I am grateful with the pain and pressure gone. Even if for a fleeting moment, it's a moment I can draw again. A moment, I can play a video game, call a loved one, empty the dishwasher, or start a movie.

I will never forget the first time a tremor occurred in public. I was in the frozen foods of Publix. We had just about wrapped up our shopping. When down at my side, my left hand twitched. It started out small, just a finger or two, I remember trying to brush it off as nothing. During this time, tremors weren't as common as the spasming was. When my arms and legs spasmed it resembled what I could only assume an exorcism looks like. But as I stood there I could feel something different about it. I panicked, my eyes jumping from face to face of every passing person. I wished I was invisible, or that I could slink up into a Looney Tunes hole. I exchanged a plea with my husband who by then noticed my hand. He wrapped his hands around mine, trying his damnedest to slow the tremor. He knew how embarrassed I got in public places. But it grew to more than the two fingers. He handed me the car keys to make a swift exit, leaving the cart in the center of the aisle. All the while my hand picking up speed. And I am suddenly very aware of my existence as the isolation seemingly separates me. I am terrified that the outlandish cartoon-style of my shaking will bring unwanted attention. That dragging my feet behind me will disrupt every quiet space I step into. Eyes flocking my way watching the strange Igor-ish creature fetching Frankenstein's monster's brain. Normality is no longer a part of my vocabulary. Although I'd do anything to feel it once again. To feel confident and assured in my steps. Rather than clumsy in them.

In cruel irony, my mind will periodically wander back to 2022. When my only fear was a staircase, or a steep incline. I still had some semblance of myself rather than the misshapen creature that shook or writhed in pain. It is the strangest feeling and extremely sobering to witness your self-decline. To see the arms you had your whole life, that created crazy works of art and even a novel, suddenly lie limp. Unable to accomplish simple tasks. Or shake so violently that it just about knocks you off your feet. But worst of all, curl into this death grip resembling a talon. To look at those disfigured fingers, almost willing them to move. Or watching my own feet, sensing that something was off. Feeling every joint pop as if I was a werewolf in a 1980s horror film. To feel so foreign to myself, making it hard not to analyze every little tic. I wouldn't wish this on anyone.

#MentalHealth #Anxiety #bodymovementdisorder #Article #scared #essay

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Today

Today I counted 101 distinct PTSD tremors before 9am (My personal best to date was 115). On tremor 101 I prayed to him to make it stop and I think he heard me. I'm now ready to face the day.#PTSD

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BOUNDARIES? sacredsavage/iameveryoneeverywhere

Since the beginning of this year I‘ve faced so many challenges, non-stop, I just cannot deal with any more. I’ve reached my mental, emotional, and physical limit, and tomorrow I’m going to postpone a scheduled procedure for a few more months (colonoscopy) because I just need a break! It will be the 3rd test for cancer I’m having since January and I still am waiting on results from the first 2 separate ones!
I just had 3 mammograms and a 6-punch biopsy. A vein was inadvertently hit, and I am entirely deeply black & blue, and in pain. 2 weeks for results. Long story of misdiagnosis, but I’m finally seeing the correct doctor to determine whether lesions on both sides of my head are cancer as my GP diagnosed. I saw a prominent movement neurologist who said I did NOT have Parkinson’s, (Yay!! Yay!!) but severe Essential Tremor which only focused ultrasound treatments to my brain or microchip implants might help diminish the tremor. (I am not independently wealthy or so inclined.)
But in addition to all the physical stuff is the termination of my relationship with my eldest daughter-she’ll be 45 soon. I just absolutely cannot “reach” her anymore.
My first daughter who I have always cherished & enjoyed began having problems in her teens, especially following my divorce in an acute domestic violence situation where I was forced to take my children & pets and give up their only home because my ex- refused to leave, and he was hurting us all. I found a great fixer-upper right across from the high school, transformed it, always had a houseful of kids, worked hard and had a happy life. Both kids were honor students and active in clubs & sports. Until my eldest dropped her good stand-by friends and began hanging out with troubled kids from other schools, and acting out. Their father’s abuse never ended, but he targeted our eldest and adamantly refused the counseling for her she so desperately needed & deserved. She turned from a sweet, bright, funny talented youngster into a rage filled, viscous, self-sabotaging bully exactly like her father. And has maintained that personality toward all her family since, blaming each of us for her unhappiness and health problems, and being unrelenting, escalating abusive, continually speaking outrageous lies and manipulative accusations that leaves her sibling and I aghast as she’s got increasingly worse over the past 10 years.
Her sibling got married, has a beautiful family, and always tried to include her sister, even’tho she was always abused & shunned. Her sister got counseling, and no longer allows the eldest into her life, although they have met several times at relatives for the children’s sake.
My eldest lives 3-4 hours drive from me. I would do look forward to her coming to visit years ago until she became very belligerent over absolutely nothing, began deliberately provoking “fights” I NEVER wanted to have any part in, objected to anything I said or asked, and got herself so angry & worked-up that she’d leave yelling, screaming, & cursing me at the top of her lungs! I live in a very quiet senior building and I did everything I knew to de-escalate the situation, each time, to no avail. The final visit, a few years ago at Thanksgiving, she suddenly lunged at me from across the living room fists raised, teeth clenched, maniacal eyes…got right up in my face, then backed off. I can never feel safe with her again. I did have a few sessions with the counselors at the local Domestic Violence Center.
So she’s continued this degrading abuse via phone calls over the past several years, blaming me for everything her father did to her, and it’s just broken my heart to hear all her bizarre, hateful, untrue name-calling and bullying. She is “in therapy” with someone online whose credentials are clearly from Walmarts 101, and who has no philosophy whatsoever other than “everything is your parents fault & there’s nothing you can do about it, so rage away making yourself sick, suffering, & staying stuck!” I can’t take any more of her endless incredible hatred. I loved that child and woman with my entire heart her whole life through thick and thin, protected her, encouraged & cheered her on, looked after her when other parents might not have bothered, had fun together…never laid a hand on her. I am gentle and reasonable with discipline that teaches consequences.
But the stress of her calls, constant demeaning without cause, is too much stress for way too long. My glucose levels skyrocket for days from the cortisol and totally mess up my diabetes & blood pressure. I just had a major Arrhythmia episode. I’m having to deal with depression & anxiety & ptsd whereas I’d reached a level of contentment and peace and pain management. She’s slammed the phone down on me once too often. I finally agreed with one of her many threats and while I said I always have and always will love her with my whole heart and soul, I will no longer tolerate her abuse in any form. No more calls or texts…until or unless she can find it in her heart to relate to me with some respect and civility. She then texted me a photo of her and a bunch of friends smiling, laughing, and said “See mom! I’m HAPPY without you! I’m having a great life without you in it!” I had a stillborn baby birth in between these two kids who I mourned over for a long time. I’m going through a great mourning now for my beloved firstborn- we’ve been thru so much together. But I feel a great sense of relief and calm is returning just these past 2 weeks and I know we’re both going to be ok. I’ve prayed for her every day and I’ll never stop. I miss who she was. A huge part of my heart and life is missing.
I’m hopeful about all my test outcomes, too. I threw my own theory into the mix. Instead of 4 or 5 specialists sending me for endless invasive tests, I’ve proposed that all my symptoms are attributable to an allergic reaction to a specific medication I started 10 years ago. I got 2 doctors to agree, so I stopped it last week and now we wait and see! Who knows? Meanwhile, should I just get the d€¥m colonoscopy over with now? Or give myself a couple months break?😵‍💫

#ChronicFatigue I #ChronicPain

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Ode To My Grandfather #Old #MentalHealth #Dementia #BasalCellCarcinoma #ADHD

My Grandfather was born in New Brunswick Canada in 1924 of Irish/Scottish/English heritage. He will turn 100 years old in November.
My Grandfather is the sweetest man I have ever known. Selfless, giving, caring of others…a gentle and quiet spirit.
I saw him yesterday at his retirement home. He lived with us until the age of 97 and was in decent health…although he has had basal cell carcinoma on his head and nose from the year I was born (for 35 years.)
A bout of pancreatitis sent him to the hospital and his health (and mind) rapidly declined in 2022.
Now, he is bedridden and almost deaf…his skin cancer has become severe and he seems to have dementia although he has not been diagnosed.
I wouldn’t wish this on my worst enemy, being 100 is not the pretty picture you see in the news. It’s ugly and sad…and if I think too long on it I get depressed because this fate has come to the most honourable of men. My Papa did not deserve this.

Let me tell you who he used to be:
A young man married with 2 children. The eldest a boy and a girl (who is my Mom.) He worked as a repairman at GM and stayed there 30 odd years retiring early due to his wife’s health. My Nana had Addison’s disease since her 30’s.
During all of this he diligently served his local Adventist Church as head elder for many years.
His hobbies included leather work/stained glass and gardening. Despite the fact that he suffered from digital tremor for much of his senior life.
He was the male influence in my life as my own father was largely absent. Even to this day in his confused state he tells my Mom that his “daughter” came to visit…while asking me who my Mom is. He has never once seen my face and not known me…

I love my Papa! If sanctification can be seen completed in the character of a human being it would be seen in him. The lovely character of Christ still shines even through all of his pain and all the deaths of loved ones including his own son…in his confusion he is as sweet and as polite as he’s always been. Never a vulgar or harsh word spoken.
He was and is my inspiration to continue in the faith…no we are never perfect in this life but we can try our hardest to live a good Christian one.

I wrote this because I don’t want the world to forget my Papa. Yes, he was/is your ordinary hard working man…but he was/is extraordinary to me.

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I'm Lost Today

Good day all. I'm wondering if you can identify. I feel lost today. I'm not quite sure who I am, how much more pain can I take, what's life going to be in 3 years or 5 years, why bother with all the self-care, why tolerate people who just can't understand, why do the cleaning, why bother with many doctor visits and tests, why, why, why bother? I am living to survive and surviving to live. I just don't know why today. I'm sure many of you have had this experience but I'd like to actually hear from someone. Have a great rest of your day. #BackPain #ChronicFatigueSyndrome #IBS#IBS #Anxiety #long haul constant pain #Tremor #Fibromyalgia

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To RISK OR NOT? sacredsavage @ The Mighty

#CheckInWithMe #Blindness #Depression #Anxiety #Diabetes #HypothyroidismUnderactiveThyroidDisease #ted # #heart Disease #Essential Tremor #Migraine #Abuse Surthrivor

Risks are daily opportunities. Were the only species able to contemplate and analyze choices, including to do nothing, when presented with a choice. I have built my life on taking many giant, some life- changing risks, and countless smaller ones, all with the goal of improving my circumstances and health. Because I began with nothing but terror, isolation, no doctors, even authorities turned away.
Beginning medication for my mental health was one of the most frightening risks I ever took, and one of my very best choices. It took awhile to get it right, which I now know is not uncommon.
What risk do you now face, what will be the consequences you consider? And is doing nothing your best option?

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I'm new here!

Hi, my name is PinkGannet46737. I'm here because I am looking for advice on how not to become overwhelmed with multiple chronic illnesses. Four years ago I was first diagnosed with Sjorgens disease. A few months later also with small vessel vasculities. Now I also have POTS and possibly Rheumatoid Arthritis, but that is not 100% certain yet. I have a tremor, numbness in my legs and lower arms, lots of joint pain , headaches, overwhelming fatigue, gastro intestinal issues mostly nausea and stomach pain, and constant anxiety. I am on Prednisone, Leflunomide, Plaquenil and Methotrexate. POTS symptoms are very severe , some days I can't get up at all, on other days it's noticeable, but not so severe that I can't do anything. I am constantly vigilant for any new symptoms, and I am worried how much worse things will get and what to do about it? The anxiety and worry keeps me up at night and I am stressed out about all of it. For any advise I would be grateful. Thanks to everyone who might read this.

#MightyTogether

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I'm new here!

Hi, my name is Jul608. I'm here because I want to have community and share. I have just been diagnosed with Parkinson’s or possibly Multiple Systems Atrophy and would like support with that as well. I have a bad hand tremor, am taking weekly shots for Behcet’s, am older lady trying to deal with multiple health problems with children but no spouse. I am very grateful for my adult children’s support through this. But I know they are frightened as MSA is a fatal disease. Some of my children have bad mental health illnesses so I don’t want to scare them. I try not to think about it being MSA. The only way I will know if I have MSA is if I have the symptoms or An MRI next year. And I have to deal with keeping my Behcet’s under control too. If I get too stressed I get a flare. I do meditate every night. That helps! I do yoga when I can. But I wish I knew what I am dealing with!

#MightyTogether

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