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08:52:00 And still waiting in the ER waiting room

Make that the not socially distanced waiting room. They did some blood work hours ago, never reported on it. Was supposed to have an EKg due to internal bleeding. Never happened. Still sitting here. Looking around. Waiting. I'm currently three feet or less from the person next to me. They have others even closer with less than a foot apart. People in wheel chairs are ontop of eachother with wheels touching eachother. I'm not at a rinky dink hospital either. I'm at the areas largest hospital, the largest in upstate NY actually at UR Medicine's Strong Memorial Hospital. To say I'm disgusted is beyond an understatement. They have no room here at all. It's nothing new since the pandemic either. This has been the standard of what they call "medicine of the highest order" for years. It's disgusting, it's abysmal, and it's horrific to say the least in the middle of a Pandemic while others sit and act like the virus doesn't exist. #Hospital #COVID19 #MentalHealth #HealthcareProviders #Depression #ComplexUnspecifiedNeuromuscularDisease #CPTSD #PTSD #Trauma

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FDA: Serological Tests Not Sufficient To Diagnose COVID-19

Directly from the FDA today (4/21/2020) "Health care providers should be aware of the limitations of serological tests intended to detect antibodies to SARS-CoV-2 and the risks to patients and the community if the test results are used as the sole basis to diagnose COVID-19.

The FDA is not aware of an antibody test that has been validated for diagnosis of SARS-CoV-2 infection. While the FDA remains open to receiving submissions for these tests for such uses, based on the underlying scientific principles of antibody tests, the FDA does not expect that an antibody test can be shown to definitively diagnose or exclude SARS-CoV-2 infection."

#FDA #COVID19 #Fibromyalgia #CheckInWithMe #MightyTogether #flattenthecurve #stayathome #ComplexUnspecifiedNeuromuscularDisease #quarantine #WritingThroughIt


SNAP - Sorry you've been fighting for SSD 5 years; No food

SNAP has some new rules thanks to Trump. Even though I'm extremely disabled with multiple rare and serious conditions, according TO SNAP now you're not disabled unless you get SSD or SSDI. Doesn't matter about anything else. They don't care that you're disabled, they don't consider you to be even though every other area of government does and every doctor does. So apparently the 9,000 who died last year waiting for social security had it easy because this year they get to die and starve. Still fighting in court and I'm beside myself. They took away part of the benefit I was receiving because of this. I'm in Monroe County, New York State. It's insanity. It's pure discrimination and absolutely disgusting. #Disability #HandicappedParking #Anxiety #Depression #CPTSD #PTSD #Fibromyalgia #ComplexUnspecifiedNeuromuscularDisease #LiverDisease #Migraine #Pain #ChronicPain #LGBTQ #Asthma #Allergies


Rare COVID-19 Symptom - Only 2 other cases of it

I was diagnosed with COVID-19 and have multiple rare underlying conditions. With the conditions I have, I often have atypical symptoms with even the most common things. So when I was finally diagnosed with COVID-19, I began at home treatment for it of just resting, intake of fluids, and that's really it except for Tylenol to keep fevers in check. After a few days, I began to get a weird rash. At first I thought it was a return of Shingles as it was only on one side but then within an hour or two it began to spread across my entire back, arms, legs, and forehead. We tried Shingrix which seems to slightly repress it but then it just kept going regardless.

According to the New England Journal of Medicine only two other cases are documented that have displayed this atypical response to the virus. I am now the third I've heard of countless others out there with similar symptomology through various support groups etc. #COVID19 #PatientAndDoctorExperiences #symptoms #RareDiseases #ChronicIllness #ComplexUnspecifiedNeuromuscularDisease #Rash #pandemic #COVID19

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COVID-19 Testing Problems in US Firsthand

Just so you know, COVID-19 numbers aren't currently accurate. I'm sick as hell going on 10 days not getting better with a whole slew of symptoms, all of which match the COVID-19 symptomology. I truly didn't think it was but my Healthcare team insisted I go get checked out at the hospital because of my health issues ontop of this. They're basically having to tell patients we think you have COVID-19 but because of a lack of tests we can only test bed ridden folks who are at risk of imminent death right now. So they're putting in diagnosis as Viral Syndrome when in fact there are countless here who have COVID-19, but because there's not enough tests and access to tests so they can't confirm cases. It's scary and sad. It also means our counts are way off. Being instructed and given paperwork as if I have it but they can't do definitive testing because of this shortage etc. I have extremely complex health issues to boot. This is not good folks. It's much more serious than you realize. The US is in a dire state right now. This is coming out of Rochester, NY, USA. #COVID19 #PatientAndDoctorExperiences #Disability #MentalHealth #AutoimmuneImmunodeficiency #CheckInWithMe #HealthCare #ComplexPosttraumaticStressDisorder #ComplexUnspecifiedNeuromuscularDisease #Awareness #Fibromyalgia #ChronicIllness



When you're sitting in the doctor's office and realize, "son of a bitch I haven't been listening for my name for the last 15 minutes!" I asked they haven't called me yet haha Brain fog... ACTIVATE!
#BrainFog #FibroFog #Fibromyalgia #ADHD #ComplexUnspecifiedNeuromuscularDisease #funny

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Burnout When You're Not Working

Burnout is a very real experience. Something I've had to learn is that it isn't just reserved for folks who are working. When you're disabled and dealing with multiple chronic conditions, you get burnt out easily as it consumes every single day of your life. Your full time job becomes going for medical tests and doctors appointments and treatments every single day. It doesn't take long for it to happen either. At one point I was feeling this sensation, but I couldn't understand what it was. I knew it felt like burnout but I'm not able to work so it was very confusing. I asked my doctor about it and he said that's exactly what it is. He explained to me how common and normal it is for people like me to suffer burnout. I ended up spacing appointments out even more to one a week at the most now because of how much they actually take out of me to go to. I was ending up canceling all my apointments, just not being able to go and endure explaining the same things over and over and over again without the reality of any sort of helpful treatment or diagnostic labeling. It wreaks havoc and can really make it hard to do what you need to, but my docs advice is what helped and helps me get through it when I have it. Don't resist it. It makes it worse. Embrace it and work with it. If you need to cancel all your appointments for a week straight or two, do it. Take a Staycation and allow yourself to have some much deserved you time. It's a reason he pushes for employers to offer much more paid time off as well because we all need this. There's no reason in a modern world that we are so against burnout like we are. But systematically we are almost not allowed to work with it or even acknowledge it without being labeled as lazy, not a hard worker, or some other less than label. That mentality in the working world falls over into the world of those who are unable to work due to chronic illnesses. So, if you're feeling like it might be burnout, talk to your doctor and develop a plan together to head it off. You too can have burnout whether or not you are able to work. You're not alone. #Burnout #Disability #ChronicIllness #Work #unabletowork #ComplexUnspecifiedNeuromuscularDisease #Fibromyalgia #Undiagnosed #Doctors #MedicalLeave #CPTSD #Depression #MentalHealth