Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
Elizabeth Hopkins Show Notes
Growing up with a parent with PTSD
0:05:50
Elizabeth's father was in the military, so they moved every few years - normal for her, but didn't know same people all her life - father was Military Police and Korean War veteran with PTSD (post traumatic stress disorder) - he had rages, inability to handle stress - fairly high up in military and investigated military suicide - he was hospitalized for a couple of weeks during the Korean War for 'shell shock' - lived on the sharp edge of his emotions
0:08:00
Be wary, be quiet - very quiet family, kids well behaved - {sound of ambulance siren in background} - Elizabeth says she is triggered by the ambulance siren that goes by several times a day - she's had PTSD since she was 16 - PTSD had gotten some better, but worse in the last 5 years since the medical error
0:09:45
Family moved to Ottawa when Elizabeth was 15 for a year before her father retired and they moved to Nova Scotia - Elizabeth went to university in New Brunswick when she was 20 - her Mom got sick and during Elizabeth's 2nd year, her mother was diagnosed with bowel cancer - both her parents would die of bowel cancer - mother battled for 4 years and 4 surgeries
0:11:00
Elizabeth graduated university and came home to work and care for her mother - Elizabeth worked as a reporter for a small town newspaper for 3 years, then a photo tech but kept connected to the newspaper - went back to school a couple of times, in 2011 to community college to take Information Technology - had been working with intellectually challenges adults and had a bad back with no chance of advancement
0:13:00
2014 Elizabeth got sick - working as a caregiver for a man with MS (multiple sclerosis) - and working another job and not eating much for about 3 months - August 2014 Elizabeth's bowel stopped functioning - a few days later started to hurt badly - no past history of gastro intestinal problems - Elizabeth was just a few years older than when her Mom was diagnosed with bowel cancer
0:15:20
The pain so bad she went to an emergency room (ER) - Elizabeth does have high blood pressure and arthritis but had never been sick - told ER she had pain in lower left abdomen - doctor said she had good bowel sounds and told her to go home and eat something, that she was only constipated - Elizabeth was relieved hearing she was going to be okay
Shamed by emergency room doctor
0:17:00
Elizabeth didn't really believe him because she'd never had pain like this before - doctor didn't do any blood tests or xrays, just sent her home at 11pm and and told her ER was for emergencies - Elizabeth felt shamed, like she was abusing the system
0:19:30
Elizabeth went to work for 8am - at about 3:30am Wed Sept 10th, Elizabeth woke up incredible pain and projectile vomiting - Elizabeth knew something was wrong, but also knew she had a 15 hour shift ahead - she went to work but spent much of the day laying on her client's bathroom floor vomiting - while also trying to take care of disabled client - Elizabeth in incredible agony and could barely walk - got home at 11pm
0:20:45
Elizabeth spent the next few days on her couch, thinking she should go to the hospital, but had been shamed - she couldn't eat - Elizabeth's roommate came home Friday Sept 13th - she asked her roommate to take her to the ER - they took some blood tests and xray - results showed diverticulitis - 'pockets' in the bowel where food / seeds can get trapped and cause infection and to be treated with antibiotics or can get sepsis and die
0:23:30
Elizabeth's white blood cell count was 28.02 and normal is 9 - but xray didn't show anything, and no surgery was mentioned - Elizabeth was given gastrograffin drink and told to come back in the morning for another drink of gastrograffin to prepare for a CAT scan
0:24:40
Resident physician took Elizabeth to small private room - he said CAT scan shows 4 holes in her intestine - he said can do 1 of 2 things: drain the abscesses and allow the bowel to heal on its own, or #2 is surgery, but he didn't say what kind - Elizabeth said 'the first option'
0:26:00
The abscesses were spilling infection outside her colon - they didn't say, but Elizabeth figured she had peritonitis because she had been walking around for 4 days with a ruptured bowel - Elizabeth was scared and thought about leaving the hospital - Elizabeth knew of a woman who had died of peritonitis induced heart attack within 12 hours of her bowel rupturing during a colonoscopy
0:28:00
Resident physician returns and says they will have to do surgery and need her to sign a form without further explanation - Elizabeth figured it was to drain the abscesses - and be done by simple laparoscopic surgery - Elizabeth could barely see because of pain - but could not see the form to read it, so she signed it
Begging to die
0:30:00
Nurse prepped Elizabeth and asked her some questions, including if she was wearing contacts lenses - they hooked Elizabeth up to an IV and gave her some pain killers and she waited 5 - 6 hours
0:32:00
They prepped Elizabeth for the surgery - asked if she had problems with blood products or allergies and confirmed she was at the hospital a year earlier for anaphylaxis - they asked if she was allergic to quinapril - anaethesiologist checked her throat and neck flexibility - but no one during all those hours asked Elizabeth if she understood what procedure she was about to undergo
0:33:45
Surgeon spoke to Elizabeth, shook her hand, a very nice man - Elizabeth felt calm, in good hands, and safe - the next things Elizabeth remembers is waking up feeling like she was cut in two - screaming, couldn't catch her breath, and tried to sit up - she couldn't see but could hear the anesthesiologist say 'No Elizabeth' - then people were holding her down, laying on top of her
0:35:15
"I felt like I had been cut in half horizontally" - Elizabeth remembers thinking it was like something out of a Stephen King novel - like a monster with claws cut her into twos - the next thing she remembers is screaming and crying and begging to die - 'please someone kill me, please let me die' - more pain than her ruptured bowel
0:36:50
Elizabeth knew something had gone horribly wrong - she was sweating from the pain - the nurse told Elizabeth that she had lost her sigmoid colon and now had an ostomy - a bag that is connected to accept waste from her colon
0:38:00
Elizabeth know also had an art line in her chest to put medications directly into her system - the nurse asked if Elizabeth was still feeling suicidal, that she must have had a reaction to the anaesthesia - but Elizabeth was still in a huge amount of pain and wanted death to escape it - her pain was not being managed
0:40:00
The nurse told Elizabeth she was emotionally overwrought when first brought into the recover room and asked if Elizabeth wanted to see a psychiatrist - Elizabeth's sight is worse because her dirty contacts are still in her eyes - Elizabeth also develops sepsis, she was already septic before the surgery - her white blood count was 25, which is very septic, but had been at 28 the night before
0:42:00
The notes from the CT scan did not mention a ruptured bowel - but the forensic report said she had one hole in her bowel - it could've been repaired with colonoscopy - but Elizabeth lost 10 inches of bowel - she was very septic and they pumped her full of antibiotics - her white blood cell count shot up to 36, 'critical'
Sepsis
0:43:30
Elizabeth so pumped full of fluids to flush out sepsis she couldn't bend her legs - but nobody told Elizabeth she was septic - a couple of young surgeons told Elizabeth that surgery went well - Elizabeth said she didn't believe in surgery and the doctor laughed at her and asked if that was a religious thing - they apparently did not know Elizabeth had surgery she did not expect
0:45:00
Only when Elizabeth got her medical records did she find out that her insestines had been glued to her peritoneum and had to be cut or burned off, a result of bowels bursting - Elizabeth does not have a spleen that was removed without her permission after a car accident, and that started her PTSD
0:46:30
Her instestines we glued to her liver, and pushing on her bladder, which was partially collapsed - it was bad and they had to do a lot of work - Elizabeth was in hospital for 11 days with infections needing IV antibiotics - the surgeon finally comes to see her and says they'll send her home next day - Elizabeth is happy but still in horrible pain
0:48:00
The next morning a different physician says that Elizabeth's white blood count is 11, and normal is 9, so they are iffy about sending her home - but they did with antibiotics and a bottle of morphine - Elizabeth spent 4 days at home in horrible pain and getting sicker and sicker - used all the morphine if first couple of days - and had to move to another apartment
0:49:45
Elizabeth calls a help line to speak with a nurse and tells her about vomiting and other symptoms - the nurse told Elizabeth to go back to the ER and was readmitted with a small bowel obstruction and the abscesses had grown, multiple infections, colitis and other things - kept Elizabeth for 2 weeks with IV antiobitics and pain killers
0:50:50
Elizabeth's health worsened because they had moved her from IV antibiotics to antibiotic pills - Elizabeth was released when the infection was under control again, 2 weeks later
0:52:00
Elizabeth was in shock for the first 3 months - she could have a conversation but couldn't think right - dissociative - couldn't believe this was happening to her, or had not been offered psychiatric help because she told them she was suicidal - when she told people she had surgery she didn't want, they dismissed her
0:53:00
Elizabeth had no depression before surgery, but sense of violation, like she'd been raped, caused suicidal feelings - those feelings not so strong now, but for 4 years Elizabeth woke up every day thinking "I want to die" - sometimes wake up in the middle of the night screaming - the trauma constantly replayed in her head - PTSD was overwhelming
Tomophobia
0:55:00
Elizabeth may have appeared 'normal' to others, but she wasn't laughing like she did before - complelely unfocused, like in a dream - Elizabeth sees her GP a few months later and says to the GP "Look what they did to me" tells the GP she just wants to die, so the GP puts Elizabeth on antidepressants to try to keep her alive
0:56:15
Elizabeth has "tomophobia", a fear of invasive events that can be traced back to an unwanted splenectomy after a car accident when she was 16 years old, and had tried to escape the hospital then - Elizabeth had been asymptomatic for PTSD since 2009, but was re-triggered by the bowel removal surgery
0:58:30
In the late 70s, Elizabeth thought the concussion from the car accident was causing her anger and rage until she read about 'shell shock' symptoms of Vietnam War vets and thought their symptoms were like hers - but she didn't receive any support
0:59:30
25 years later and another traumatic event caused PTSD and therapy helped some - venting, talking and writing about it always helped - being able to take control also helps a lot - this last trauma has not been so bad because she's been able to talk about it and file a complaint to the Nova Scotia College of Physicians, but they didn't believe her and dismissed her complaint
1:00:30
Elizabeth didn't want any one to get into trouble, she justed wanted to know how and why it happened to her - the surgeon was not very honest, his report said he was surprised Elizabeth was claiming she wasn't properly informed, then descended into an ad hominen attack on Elizabeth's character and made her sound ridiculous and like a crazy person
1:02:00
Surgeon also wrote that Elizabeth had been diagnosed with a sexually transmitted disease, dyspareunia - this shocked Elizabeth, almost as much as waking up with an ostomy bag - but Elizabeth had blood tests that showed no infection - Elizabeth knew this was the surgeon trying to discredit her - Elizabeth asked the College of Physicians to ask for the notes the surgeon claims show an STD, but they didn't - more institutional betrayal
1:04:00
Elizabeth's GP received a copy of the surgeon's report - but there was nothing about informed consent - the GP tried to defend the surgeon - but Elizabeth pointed out they had 5 hours and no body talked to her about what procedure she was going to have
1:06:00
Elizabeth thinks they are good people, but too routine and easy to forget if no check list in place - this unwanted surgery is the most horrid inhumane thing any one has ever done to Elizabeth - but she feels conflicted: on the one hand, they were working to save her, and on the other hand, she didn't want bowel surgery
1:07:45
This should have been a 'never event' - it never should have happened - but writing letters and complaints has helped - Elizabeth likens it to Restorative Justice where the victim gets to tell the perpetrator how the crime has affected them
Making meaning (and cookies)
1:09:45
Having the College of Physicians dismiss Elizabeth's complaint and believe the surgeon's lies, makes her PTSD worse - Elizabeth just wanted him to accept responsbility - Elizabeth's brother is a lawyer and said suing is useless, only 2% find in favor of the victim - Elizabeth just wants people to learn from it so others don't have the same experience
1:11:15
Elizabeth is writing a mental wellness cook book using a lot of her Mom's old recipes - Elizabeth is also a graphic designer and will design the book and include information about mental wellness - people have been able to accomplish a lot in spite of mental illness - Madame Currie had depression, Veronica Lake had schizophrenia
1:13:00
A lot of the cook book is about depression and PTSD, but includes facts and figures, like countries where the suicide rate has decreased - her book is titled Mental Health Cook Book, she's illustrating it herself and is half way done - but it has helped distract her from PTSD
1:14:00
Elizabeth makes dinner each day for an intellectually challenged friend, and this adds more meaning and reason to live - Elizabeth has believed in the righ to die since she was 15 and her mother was dying from cancer - but also believes in the right to life, so both sides of the right to die debate
1:16:45
Elizabeth does not want to point fingers at specific doctors, she beleives they meant well - but what happened to her can happen to any one - sometimes PTSD can be so bad you'd rather die
1:18:00
Elizabeth is still healing physically, some lessened pain, and her bowel is working a bit better - emotionally quite a bit better, but she still has PTSD and will last a long time - Elizabeth tries to find the positives in things
1:19:15
Sometimes anesthesia can mess up a person's brain - Elizabeth was not depressed before the bowel surgery - but her PTSD has always been treatment resistant - but some people do respond to trauma therapy - Elizabeth finds writing it down both difficult and therapeutic
1:21:25
From Elizabeth's experience, anger - even justifiable anger - is darker and more malignant than any cancer - doesn't do any thing to person you're angry at, it destroys you - Elizabeth suggests video recording the informed consent - there was a doctor who lost her license for performing multiple surgeries and taking out body parts without getting consent - she had 27 patients with adverse outcomes
1:22:45
You can only make decisions based on what you are told - a doctor is only as good as the information that passes back and forth with the patient - and recording the informed consent is safety for the hospital and the patient
