Hello, this is my first posting and I hope that I can explain my situation and reach out to others with similar experiences.
In November 2018 I was suddenly stricken with the most excruciating pain on the lower right side of my abdomen. The pain began out of the blue and very suddenly. The pain was so extreme that all I could do was scream. I live alone and all I could do was to dial 911 and scream, hoping that my call could be traced. I literally could not speak and the pain was constant. My call was traced and the paramedics arrived. They tried to ask me necessary questions and all I could do was scream plus I have a severe hearing loss (wear hearing aids in both ears) and it was very hard to hear them.
I was rushed to ER and right from the beginning the nurses and staff were frustrated between my being unable to hear well and speak due to the severe pain. After standard tests they gave me morphine, but it did not lessen the pain. I have two grown children who do not live near me and they are diagnosed with high functioning autism. My other family members have all passed on. I was admitted to the hospital and tried to speak a few words between the constant pain. After they obtained my medical records there was a long list of illnesses too many to mention, but the one illness that was listed most recently was the diagnosis of having EDS hyper mobile, possibly sub vascular. The nurses were angry and callous and continued to tell me to stop crying and screaming. when being in a hospital is it not common for people to be in pain and show it???
I had no personal belongings and no one to go to my home to gather things. I had an iPhone but no charger with me and the charge was about half gone. I needed to contact my daughter and son and could not due to the pain. I gave the staff members the phone numbers for my son and daughter to contact them. My daughter was able to speak with a nurse and then text me what information she was able to gather. After hours of testing I learned that my liver had a large abscess, I had three gastric ulcers, a massive infection due to chronic UTI infection and sepsis, also severe headache (migraine with aura). There were two infectious disease doctors, and one urologist and gastroenterologist reviewing my case. I needed a PICC line put in to administer antibiotics but when the PICC line was put in it caused a blood clot in my left arm...very painful...all I remember is so much pain. I was strapped to the bed and not allowed to use the bathroom. They put a large napkin beneath me and the strong antibiotics caused my bowels to empty and they did not hook me up to a catheter. The continual exposure to the acidity against my skin from laying in my bodily discharge caused my skin to burn, blister and bleed. I was forced to lay far too long and they did not hook up a catheter either and the nurses were not happy with attending to me. One nurse balled me out and shouted that I should have asked for a bed pan. I told her I did ask for one...there was a button to push to ask for help and when I pushed the button for help no one would come...they were clearly understaffed. I did not know if I was going to live or die, the pain was excruciating. I had a tube put in my side that went into my liver to drain the abscess, I had a PiCC line in my right arm and my left arm was so badly swollen from the blood clot that I could not move it or use my fingers. I had no family there to oversee or bring me much needed items.
Since I could not hear the doctors when they came to see me there was no one to help interpret things...I lost my hearing when I was 27 years old over a period of several weeks. It was a permanent loss. I wore the best hearing aids one could wear to enable me to hear conversation and I had surgery in both ears. I did not learn sign language nor did my family. Doctors could not explain why my hearing was lost so suddenly. I did well reading lips and dealing with the hearing loss and did all that was possible to fit into the hearing world. So being in the hospital and alone and not hearing the doctors and staff was very difficult and the pain was more than I could bear. I cried often and at times had to call and yell for help asking someone to please help to change me and clean up because of the worsening rash. It was humiliating beyond words. One nurse while she was standing beside me called the doctor and she shouted in an angry tone (and I did hear her) saying that all I do is cry and moan and cry and moan. The doctor ordered pain medication every three hours (dilaudid). There were many tests and some took many hours to complete. There was no sleep. There was no Kleenex, no one to wipe my face, no bed changes. Many of the tests required fasting with no water or food and the tests were delayed so it was many hours without water. When I asked a nurse for a chip of ice she 'no'...
I did cry and moan but is that something wrong to do when being in sick and in the hospital? Had no one seen other patients in pain too and understood the depths and emotional aspects of being sick and alone? After spending eight days in the hospital I was transferred to a home and kept on a PICC line for 8 weeks and given antibiotics. The nurses at the home were callous and again would ball me out if I asked for help. I was approached by two people who wanted me to sign (right then and there) a document that would instantly place me in assisted living. I had a home and a life and bills and suddenly I am strapped to a bed and told to sign papers and be put away. I did not sign anything. It is sad how people can slip through the cracks, but even sadder how people who are so very sick can be mistreated and neglected. I have nightmares and flashbacks and PTSD. I told doctors and nurses about being diagnosed with EDS. No one ever paid attention, and I do understand that there are few people who have heard of EDS. I am in constant pain every day from the many comorbidities I have due to EDS. I had a brain aneurysm at age 38 and have been taking verapamil (a calcium channel blocker) for over 30 years. The neurologist I saw at that time diagnosed me with FMD (fibromuscular dysplasia)...when I was diagnosed with EDS hypermobile the doctor also diagnosed AS (ankolysing spondalitis) CFS (chronic fatigue syndrome) advanced osteoarthritis, kidney stones, chronic bladder and UTI infection, chronic pain and inflammation and joints that pop out of place, migraine with aura, IBS, hemorrhoids, TMJ, irregular heartbeat and palpitations...too many illnesses to juggle anymore, but I feel the lack of awareness about EDS can leave people in situations that are horrific.
I hope that some day the medical community will be aware of EDS and its many facets and there will be preliminary tests given when patients have multiple unexplained symptoms. I pray to keep writing and sharing the many illnesses involved with EDS and it's many forms. I pray that people will not fall through the cracks and be told to stop crying and moaning due to pain laying in a hospital bed.
Thank you for allowing me to share. #EDS