ComplexUnspecifiedNeuromuscularDisease

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

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 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

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

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