Brain Aneurysm

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    Community Voices

    Hospitalized in severe pain and EDS was overlooked even though it was on my medical records

    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

    8 people are talking about this
    Community Voices

    Grief

    My 41 year old daughter died from a brain aneurysm 6 weeks ago. I found her body and I can't get the image out of my head. I start each morning by crying because I miss her so much and then I try to get on with my day. This is so stinking hard! I'm afraid the pain will never go away and I don't want to feel like this forever. I'm starting counseling next week. I sure hope it helps. I have a son with Down Syndrome (age 34) who is equally traumatized and I don't know how to help him.

    4 people are talking about this
    Community Voices

    Check in with your loved ones.

    I'm a single mom who is always busy with work constantly and rarely have time for myself. I try my best to make sure everyone else is doing good. Because i worry more than i would like to. When i my grown children do not check in with me i worry. In this day in age i don't know what could possibly happen to them. And now i have grandchildren who i also constantly worry about. Anyone who knows me knows that my family is very important to me. I now check in with everyone as much as i can because my family is spread out.

    But there are days that i'm not good and at night sometime i cry myself to sleep because i'm going through something and really have no one to talk to and then i realize that God is always listening to me and than i start to think to myself that i could be talking to much to God and find myself thinking girl shut up because he has so much on his plate trying to watch over all his children with the world we live in today. About 6 years ago i suffered a brain aneurysm and almost died. Well i had to be air lifted to another part of the state i live in by myself with out my family and let's say that when some of my family was notified about my health situation they didn't check in to see if i was alright and that hurt because they could check in with me when they needed my help with what ever they were going through. But when i needed the love of my family they were not there for my boys who were young and who was about to lose their mother. My point is at that time i went through that and began recovery i wanted to die because i was tired of everything in my life and i really didn't care who i was leaving behind because i felt they wouldn't realize that i was gone anyway because while i was living no one checked in at all. Some would say that my life ended that day back in September 16th of 2016 I see it as my life started that day. God showed me everything that is important to me and showed me that I needed to make more time for him and not to worry about the things of this world because no matter what I think that i'm going through alone that he is always here for me through it all. I Love the Lord Thy God with all my heart because when I'm lonely that he has made it that way so I can spend more time with him and lean and depend on him.

    Community Voices

    Therapist said to get part time job?

    I will start with? I'm not ready, my job his a high stress job, I get there is more harder amd stress full job but I'm a excutive chef, in my until there is 4 food service counter 3 live action and a pizza station, I over see health and safety for my unit and the Tim's in my college with 2 different areas, im always making menus, creating new dish for my other part wich is catering, for catering I cook for the school events, out side catering wich is for the Canadian military in the outside skirts of my city, it's a training camp, in that group there is from 80 to 300, 3 meals a day diliverded 45 minutes away 3 times a day, first drop is at 630 am last 430 pm, I order food for my unit a.d dairy for Tim's along with retail in my unit, I've got at this location over 30 employees, they come and go, nobody wants to work now days so that puts more on my plate but no big deal I'm good with all of this, also inventory and I go to other schools to help one is university and other 2 hours away, I've work hard fir my job, I was given a title that ppl go to school and work under a excutive chef, in time they will get this title I'd they want to do the job, for me well very little education, I've been on the street from the age of 15 and made my way up, so to be given this title by one of the biggest food service in the world we are actually the 6 biggest, this is a great accomplishment, so I think lol of course it is I dint need anyone to tell me this, before I whent on my leave for my month health I was drinking over 26 Oz of vodka every day sometime more, so by stopping this self medicated my past came at me hard, I was crying in staff room dry storage walkin fridge freezer and some time in the open, I made a 7000$ mistake and it was instead of ordering 6 only of something I said 6 case, it was not a problem I can send this to other locations but the fact is I made a mistake of 7000, I've talk to my district manager and told him what was going on, you see this company will look 9ut for there staff, actually one day I was having health issues high blood pressure and i was at work and my district manager removed my lap top a d drove me to the hospital and he came in for bit and whemt back to work, after work he came back and waited for me to drive me home and he did have my lap top lol he did not want me to work at the hospital but jokes on him he had a brain aneurysm and was hospitalized for a week and he was working at the hospital, lol, I told him to practice what he preaches, at other time my food service manager brought me in and had a plan for me so I can leave my ex they knew this and could not see me diving like that and my sous chef offered me a room until I pic my self up.

    so do I go with knowing that I can't do my job or take all the time I need? that's a simple one there take the time I need and my district manager told me not to come back until I know I'm good and this therapist wants me to go and work part time, im not doing it I wait

    1 person is talking about this
    Community Voices
    Community Voices

    Damaged child, more damaged adult.

    My first memory that my brain always finds it’s way back to was walking in on my father one night, kneeled by his bedroom window, crying uncontrollably; which was scary for a 4 year old girl who had never seen her parents cry. As a matter of fact, we were taught at a very young age that you’re not allowed to cry, must stay stoic or my father would give me something to cry about.

    A little history of the parents/family.

    My father was a hard worker, deacon at our church who strongly believed to spare the rod, spoil the child. I had one sister who was 2 years older. Her name, Tiffany… mine being Stephanie was literally hell growing up lol

    Our mother, who herself ended up in an orphanage at the age of 11 due to her mother suddenly dying from a brain aneurysm and her father was an alcoholic and abuser who left once my mother’s mother passed. I grew up living next door to my only set of grandparents. I was raised on a cow farm. Which I HATED!!!!

    I always remembered wat hung all the love my sister would receive from our Mom, but never would she show me any type of love. I remember climbing bookshelves or trees just to fall out in hopes to get my mothers attention. Many failed attempts for years.

    At the age of 12 my father divorced my mom. In turn, my mother shortly after dad was gone, she dropped me off at my babysitters (a couple in their 20’s) long story short from the age of 12-13 I was molested and raped by the husband. I remember calling and crying for my mom to please come back and get me. With no avail. Her and my sister up and moved to Ga. about 4 hours away. At that time my dad found me and came and removed me from the home I was abandoned at. My dad became a hero to me. He also had a girlfriend and I felt like I was getting a fresh start. Finally! Well not long after moving in, so did my stepmom. Little did I know she was a huge drinker and turned my father into an alcoholic. Abusive emotionally and mentally. Marriage didn’t last, she tried to commit suicide right in front of me by slashing her wrist. I was 14! For the next 5 years I spent my nights searching for dad bc I was scared he’d kill himself bc God only knows how many attempts he’s made. My first memory of dad running through the house with a shotgun was probably 5 or 6 years old.

    Keeping it short, my mom never tried to have any sort of relationship with me. I became very resentful. Cut her out of my life just to get a call at 18 that my mom had Multiple Sclerosis and will be lucky to live another year. She died 6 months later. I didn’t even cry at her memorial. I became an addict bc it was the only thing that helped me not feel or think of all the pain I was carrying. The only reason I haven’t given up on myself is because NOW I am the MOTHER. And one thing my mom taught me, was how NOT to be a mother. I made my children my life. I was a high functioning addict, but one day I woke up and said enough, checked myself in to treatment and stayed there until I graduated. I finally saw something all the way through. Now I can be an even better mom. That was 4/02/2015 and once I got clean, I had no idea what was in store for me. Somehow I became Epileptic. So many hospital stays, fighting for my life on ventilators bc of Grand-mal’s … days would go by that I would seize nonstop. I have no memory of most days… It’s made me at 37 become disabled. And my mental illness tells me it’s what I deserve. And in a way, I agree. If I could have just made peace with my mom maybe I would t have turned out like this. But the year I lost my mom, I also lost my grandparents that year as well. At 18 losing over half your family is pretty tough. But despite all my adversities, I still stand. It can’t be for no reason, so I patiently wait for my suffering to stand for something. Help one person, this is my story and it’s not a great one. But being a Mother to my two daughters, oh that’s the silver lining. My world and my hope for a better tomorrow and I pray my girls get the life I didn’t bc then that will mean I didn’t suffer in vain. It’s worth all the bad days in my life to ensure a happy one for my children

    7 people are talking about this
    Community Voices

    At times, I get really bad migraines and I am afraid to sleep so I don’t sleep all night but it’s not every night, is that considered insomnia?

    I don’t sleep when I have a very bad migraines because I am terrified that I won’t wake up. My cousin, she was a nurse, went home with a migraine and laid down but never woke up again because she had a brain aneurysm. Am I overreacting?

    11 people are talking about this
    Community Voices

    Im really struggling with my physical symptoms/health anxiety. I dont know if anyone else struggles with this, but I can never stop thinking about my health & worrying about bodily sensations. Im convinced ive got heart problems/brain tumour/brain aneurysm... anything you can think of, i think ive got it. It might be because I dont really understand my physical symptoms of my anxiety or im not familiar with my body. I dont know, i just know everytime i get a sharp pain in my head or chest, i really think im going to die. Does anyone else ever feel like this? #Health #Health #Anxie #Anxiety #HealthAnxiety

    4 people are talking about this
    Community Voices

    Im really struggling with my physical symptoms/health anxiety. I dont know if anyone else struggles with this, but I can never stop thinking about my health & worrying about bodily sensations. Im convinced ive got heart problems/brain tumour/brain aneurysm... anything you can think of, i think ive got it. It might be because I dont really understand my physical symptoms of my anxiety or im not familiar with my body. I dont know, i just know everytime i get a sharp pain in my head or chest, i really think im going to die. Does anyone else ever feel like this? #Health #Health #Anxie #Anxiety #HealthAnxiety

    2 people are talking about this
    Community Voices

    Im really struggling with my physical symptoms/health anxiety. I dont know if anyone else struggles with this, but I can never stop thinking about my health & worrying about bodily sensations. Im convinced ive got heart problems/brain tumour/brain aneurysm... anything you can think of, i think ive got it. It might be because I dont really understand my physical symptoms of my anxiety or im not familiar with my body. I dont know, i just know everytime i get a sharp pain in my head or chest, i really think im going to die. Does anyone else ever feel like this? #Health #Health #Anxie #Anxiety #HealthAnxiety

    6 people are talking about this