Donation protected
I really don’t know where to start but I’m finally home from my 27 day hospital stay where I was treated like a DNR instead of a FULL code. As most of you know I have a rare disease called myasthenia gravis that cause severe muscle weakness. I have never let that stop me since being diagnosed in 2018.
I went Into the hospital Dec 27 for what I thought was a MG flare after I stopped being able to walk and move any of my limbs. During this stay none of my nurses gave me a assessment. My purse was stolen bc most of them thought I was blind. I couldn’t feed myself & half the time they would not feed me. But needless to say I was complaining of chest pain that didn’t get reported. After getting plasma exchange I was still sent home Jan 5 With shortness of breath, chest pain and swallowing issues. The plasma exchange gave me enough strength to walk but that was it.
I came home and spent days on the couch my 7 year old and my mom helped me get to my pills bc I was too weak to use my hands or even pick up a cup. I did this until Jan 10 my mom called the Ambulance bc I could no longer swallow at all.
During this hospitalization I was placed on a soft diet and was bed bound. I was transferred to another until after 4 days on a surgical unit bc that was the only bed I could get. During my transfer my medication was mistakingly changed from IV to oral. This isn’t a pain medication this is a medication called Mestinon that helps me with my strength. I told the nurse I could not swallow it and she told me it was night shift and nobody made those changes at night. Trying to keep calm I called my mom and best friend/2nd mom to try to get them to explain to the nurse why I needed this medication. If it wasn’t for my best friend calling and reaching out to my nurse idk if she would have even came in the room. I started having slurred speech and eventually couldn’t speak at all since I was never given my medicine. They kept saying I was anxious, crazy and that I was “bat shit crazy” that night as I was suffocating she took the call light to where she knew I couldn’t reach it and I was left all night struggling to breathe. I kept pulling off my telemetry leads hoping somebody would come find me and help
Me.
During this hospitalization I was placed on a soft diet and was bed bound. I was transferred to another until after 4 days on a surgical unit bc that was the only bed I could get. During my transfer my medication was mistakingly changed from IV to oral. This isn’t a pain medication this is a medication called Mestinon that helps me with my strength. I told the nurse I could not swallow it and she told me it was night shift and nobody made those changes at night. Trying to keep calm I called my mom and best friend/2nd mom to try to get them to explain to the nurse why I needed this medication. If it wasn’t for my best friend calling and reaching out to my nurse idk if she would have even came in the room. I started having slurred speech and eventually couldn’t speak at all since I was never given my medicine. They kept saying I was anxious, crazy and that I was “bat shit crazy” that night as I was suffocating she took the call light to where she knew I couldn’t reach it and I was left all night struggling to breathe. I kept pulling off my telemetry leads hoping somebody would come find me and help me.
It wasn’t until the next morning when my mom came in that she told them this was not me and by the grace of God that’s all I remember until waking up in the ICU on life support bc I had pneumonia and a blood clot in my lung that caused me to have respiratory failureand hypoxia. I don’t remember what all treatments I had bc I was sedated but my stay in the ICU was much better. My recovery is more extreme after being on the vent especially with myasthenia gravis.
Im thankful I’m still here. I almost lost my life bc I was not taken serious. This is not me I’m very independent but this is beyond my control.
I’m still not right. I lost my insurance from my job and I need one more treatment to see if this will help me get back on my feet. I am going to take out Cobra bc no insurance company will take me due to my pre existing condition. I am asking for any donations right now to get me where I need to be .... I am still short of breath and my eyes aren’t good. My treatments may help and I want to try. I appreciate any donations.
As a Nurse, I know what a patient is supposed to be treated like and as a Mother, I know how people are supposed to be loved! I appreciate any and every donation I receive and I am so grateful for you all.
I have included some pictures of me in the hospital and some pictures of me when I am in my better health.
I went Into the hospital Dec 27 for what I thought was a MG flare after I stopped being able to walk and move any of my limbs. During this stay none of my nurses gave me a assessment. My purse was stolen bc most of them thought I was blind. I couldn’t feed myself & half the time they would not feed me. But needless to say I was complaining of chest pain that didn’t get reported. After getting plasma exchange I was still sent home Jan 5 With shortness of breath, chest pain and swallowing issues. The plasma exchange gave me enough strength to walk but that was it.
I came home and spent days on the couch my 7 year old and my mom helped me get to my pills bc I was too weak to use my hands or even pick up a cup. I did this until Jan 10 my mom called the Ambulance bc I could no longer swallow at all.
During this hospitalization I was placed on a soft diet and was bed bound. I was transferred to another until after 4 days on a surgical unit bc that was the only bed I could get. During my transfer my medication was mistakingly changed from IV to oral. This isn’t a pain medication this is a medication called Mestinon that helps me with my strength. I told the nurse I could not swallow it and she told me it was night shift and nobody made those changes at night. Trying to keep calm I called my mom and best friend/2nd mom to try to get them to explain to the nurse why I needed this medication. If it wasn’t for my best friend calling and reaching out to my nurse idk if she would have even came in the room. I started having slurred speech and eventually couldn’t speak at all since I was never given my medicine. They kept saying I was anxious, crazy and that I was “bat shit crazy” that night as I was suffocating she took the call light to where she knew I couldn’t reach it and I was left all night struggling to breathe. I kept pulling off my telemetry leads hoping somebody would come find me and help
Me.
During this hospitalization I was placed on a soft diet and was bed bound. I was transferred to another until after 4 days on a surgical unit bc that was the only bed I could get. During my transfer my medication was mistakingly changed from IV to oral. This isn’t a pain medication this is a medication called Mestinon that helps me with my strength. I told the nurse I could not swallow it and she told me it was night shift and nobody made those changes at night. Trying to keep calm I called my mom and best friend/2nd mom to try to get them to explain to the nurse why I needed this medication. If it wasn’t for my best friend calling and reaching out to my nurse idk if she would have even came in the room. I started having slurred speech and eventually couldn’t speak at all since I was never given my medicine. They kept saying I was anxious, crazy and that I was “bat shit crazy” that night as I was suffocating she took the call light to where she knew I couldn’t reach it and I was left all night struggling to breathe. I kept pulling off my telemetry leads hoping somebody would come find me and help me.
It wasn’t until the next morning when my mom came in that she told them this was not me and by the grace of God that’s all I remember until waking up in the ICU on life support bc I had pneumonia and a blood clot in my lung that caused me to have respiratory failureand hypoxia. I don’t remember what all treatments I had bc I was sedated but my stay in the ICU was much better. My recovery is more extreme after being on the vent especially with myasthenia gravis.
Im thankful I’m still here. I almost lost my life bc I was not taken serious. This is not me I’m very independent but this is beyond my control.
I’m still not right. I lost my insurance from my job and I need one more treatment to see if this will help me get back on my feet. I am going to take out Cobra bc no insurance company will take me due to my pre existing condition. I am asking for any donations right now to get me where I need to be .... I am still short of breath and my eyes aren’t good. My treatments may help and I want to try. I appreciate any donations.
As a Nurse, I know what a patient is supposed to be treated like and as a Mother, I know how people are supposed to be loved! I appreciate any and every donation I receive and I am so grateful for you all.
I have included some pictures of me in the hospital and some pictures of me when I am in my better health.
Organiser
Ebony Merriweather
Organiser
Charlotte, NC