Our souls can't flourish in a society were American algorithms police Australian community standards. This interview has been taken down from FB for breaching community standards. ~Michael Gray Grifffith
NOTES: 20TH June 2022 – Sally
I am home now. Stayed for 10 days. Pre-arranged admission.
I was referred by my treating Professor of Neurology to have extensive testing by the best neurologists in Victoria, and or the Country! I was told they were the “best” experts and quite possibly the top specialists around! So I held hope and had expectations. I waited 4 months with acute multiple symptoms. I waited and waited and even when my symptoms became worse my GP opted out of doing anything because there was a plan in place to see the experts in St. Vincent’s. So I suffered and waited.
My takeaway from my experience and firsthand witness is this:
“As long as they can control the Drs, they control the narrative”
People trust Drs with their most valuable possession and that’s their health. The Drs are in a position to turn this around, not anyone else, the most trusted professionals around. But Drs are compliant and are pushing people to breaking point. I saw this firsthand. More harm than good.
I am a survivor of a neurological / brain injury and I’m recovering without medical specialist care. It's up to me now and I will continue to fight this.
Day 1 – Thursday
Arrived and welcomed by sympathetic, caring and warm nurses. I learned that night my nurse was injured. Same age as me with heart issues and she’s never been the same since. It was her second last shift before going on leave because of her health. She told me she sold everything because she wasn’t sure of her future. I was deeply pained by this and hit me profoundly.
I had to do a pcr test which was neg.
I was admitted under a Jnr neuro Dr. She was on-call so the interview with me was constantly interrupted every 5 mins – so it took around 2 hours to tell her my history. It was exhausting. But as advised by my referring Dr, I took my notes and USB with my video diaries of timeline events; exactly what has happened to me. I handed all of these over.
Day 2 – Friday
Woke early 4am thinking of the injured nurse.
Allied health assessments -
OT
Speech
Physio
Dietician
Weight: 56kg – loss of 5kgs since 1st Seizure in Dec.
This took nearly all day and was overwhelming and exhausting. My brain was exhausted, and I was feeling it. I had memory testing, mobility assessment, speech and swallow testing. I was placed on a regular / thin fluids diet as tolerated at a slow rate with small mouthfuls, alternating food and fluids. Some foods and tablets were getting caught. Memory recall test scored the same as my rehab team at home.
Physio: notes right side weakness arms and legs.
By the end of this I was starting to feel significantly unwell. My head was aching, my face and ear painful and speech greatly declining. I became nauseous and wanted to curl up into a ball to let it pass. Evening: But as I was experiencing these dreadful symptoms, I was transferred to a 4-bed ward. The noise was overwhelming, and I was getting triggered by the lights. I had to sleep it off. No Dr came to see me.
Day 3 - Saturday
Morning: Feeling unwell as I did when I went to sleep. Many triggers and I told the nurse. I managed a shower, sitting on the shower chair but feeling terrible and that something wasn’t right. My heart rate was all over the place, again told the nurse. I have previously been diagnosed with POTS months earlier. Nurse checked my heart rate but it settled to 100Bpm. I was just feeling terrible and my headache and nausea was starting to kick off again. I was given analgesia and anti-nausea and ear plugs. As I sat on the edge of the bed I said to the nurse, I just don’t know what it is, but I feel really strange and awful. Nurse was with me, my legs and arms started to tremor and she asked me if that was my aura? I said I didn’t know. Nurse told me to lie down and I directly had a seizure. I was unable to communicate with total loss of speech. Abnormal ECG. Tachycardia. The emergency team was called. Seizure for around 10 mins and a second 15min later for around 30 seconds. Took a while to come around, regain my speech, answer questions and lift my legs and arms. Insane headache afterwards. Slept for hours.
Day 4 – Sunday
Feeling flat, recovering from seizure. Head and R) facial pain, ear pain. R) side weakness. Slurred speech. Exhausting to talk. Swallow problem, dry foods getting caught, washing down with fluids between mouthfuls.
Severe nausea, headache, facial and ear pain (R) and vertigo. Felt like I had gone backwards with all that work I had done. Heat packs to my face and ear. Still feeling flat from seizure. Pharmacist came to see me. She suggested they may be thinking of Trigeminal nerve for my face??
5pm the Drs came around to formally assess me for 1st time, I had already been here 4 days. Drs did not look at my USB of diaries / evidence. They asked from the beginning about everything. I didn’t want to discuss the vaccine and the anaphylaxis, but they went there and wanted to know it all. I said I didn’t want to go over the this, that I was here for help in treating my symptoms. At the end of the discussion they were going on about migraine as the cause. I didn’t accept this. I said that I have at least 30 symptoms since the anaphylaxis and its being going for over 10 months. I think I would know if I had a migraine! They requested to do an induced seizure EEG. I was also told migraine and tinnitus were normal reactions. My tinnitus is deafening and I have no migraine. As the Drs left, I immediately requested to see them again to say I don’t consent to a seizure induced EEG. They were unavailable. I started writing notes on the back of my meal tray menu slip. Visit from OT and dietician. Young male opposite me in wheelchair, paralysed in legs after second Pfizer. He seems stressed, in pain and desperate for help and answers. He’s been unable to work for 3 months and required to sell his business with a family to support.
Day 6 – Tuesday
I miss home. My face is so painful, my ear. I look terrible. I’m not consenting to an induced seizure EEG. This was already witnessed by the medical team. I felt its unsafe and frightening. Taking me days to get over the seizure just 3 days ago. Told the nursing staff that I wasn’t consenting to the induced EEG. No Dr today. I was ready to discharge myself. Visit from Social worker, asked how I was going. Explained I was feeling like I was being shut down and not listening to me. I just want to be valued, to be heard and be part of my healthcare and recovery.
Day 7 – Wednesday
11am my nurse received a call from EEG dept for me to come. I said NO, NO, NO! I was promised it wasn’t planned to be induced. My nurse wrote on a piece of paper for me to give them, NO INDUCED SEIZURE – signed by my nurse. After the flashing led test lights, tremors, jerking and seizure again. No speech and instant headache. Lots of excess saliva in my throat. Sever nausea. Felt exhausted and terrible. I was returned to the ward and recovered in my bed for hours sleeping it off and feeling like there was nothing left in me. I lay quiet for hours with my eyes covered and my speech slow to return.
1530hrs Jnr Dr came to see me. Talked about EEG seizure today. Waiting results. Said I wasn’t happy with discussion of migraine as cause. I revisited this yesterday from yesterday discussion. Said I am a nurse for over 20 years and this is not sensible. I have approx. 30 symptoms so far – and I read out each symptom carefully to the Dr. I made the Dr listen to my list. Plus, I said I think I would know if I had a migraine AND I shouldn’t need this much rehab for migraine. And more-so, I shouldn’t need this much rehab after a vaccine! So, I am not accepting this. I just need help treating my symptoms please. I am an expert of my own body and you don’t need to be a rocket scientist to see there’s clearly a problem with my face, my speech, memory, functioning, my right side and the seizures. I even said to him, I am begging you to help with my symptoms The Dr nodded yes, I understand. I also said that wishy-washy diagnosis aren’t helpful for me getting the right support I need for recovery. I told him categorically, I’ve had a neurological event. This was the beginning of the year and now 6 months here on this is the damage left behind, including my face and ear. I added Looking at tests and relying on them wholly for a diagnosis isn’t enough. Call me old fashioned, but where have the days gone where you look at the person, how they are presenting, their symptoms, duration and history. That’s the bigger picture! Dr assured me they are looking at everything. I made the Dr watch one of my videos - from when I was in debilitating facial pain (on my phone). I could tell he was uninterested, and I was taking up his time. I begged him: my symptoms – burning facial and ear pain, over the eye, the eye, nose, jaw, teeth and just under my neck. Said I need help with this! He told me they were having a big Dr meeting Friday. I asked him if he would advocate for me and he said Yes.
These are the symptoms I read out to the Dr indicating he was un-interested:
Anaphylaxis (this is where it started – 10 min after the jab)
Severe deafening tinnitus
Verified severe hearing loss
Headache
dizziness
nausea
POTS
Speech loss
Memory loss
Weight loss
R) leg dysfunction / turning blue /cold
R) severe ear pain
Seizures
Stroke symptoms (Right side)
Facial paralysis / drop (R)
Reduced independence and activities of daily living
Reduced mobility / using aids
Severe fatigue
Brain fog
Vertigo
Severe travel sickness
Sensitivity to sound / overload
Sensitivity to light / photophobia
Cognitive impairment / concentration
Tremors
R) eye pain
High inflammatory markers CD4 + CD8
High IgE
L) swollen gland
High falls risk / 1x fall due to balance
Tachycardia episodes
low blood pressure
Intensive rehab for past 6 months
Swallow impairment – using a straw also
Numbness / pins and needles in both legs
Reduced quality of life
And about my face I said:
R) pain gets worse with cold, wind, touch, eating, talking, above and around the eye, nose and jaw. Sharp pain. Heat pack helps, warmth, but I’m having to endure it every day. I know there’s a nerve problem and I need help please. I was polite and patient.
Day 8 – Thursday
Jnr Dr came around in the morning. He said: no results yet or any decisions made, and the meeting will be tomorrow. I confirmed to him: Lets be clear about this, I won’t be receiving any weak diagnosis for the rapid decline in my health and neurological symptoms. aside of the cause, which I didn’t primarily come here for, I came here to get help and treatment for my symptoms. Will you be at the meeting? He said yes. I asked: Have you watched any of my videos? He said no. He barely stayed 5mins.
Lost 1kg. Weight now 55kg
Day 9 - Friday
Big meeting was over early??? I was seen by Jnr Dr again early Friday morning. I acknowledged that it must have been a quick meeting?! It was explained to me that that they couldn’t find anything wrong with me. Tests didn’t show anything. I was gaslit. So I replied: what about what we discussed yesterday, about assessing a person on what is in front of you, what presents before you with video data of what’s happening, their history and duration??? The Dr could not answer me. He was just the messenger and there was no way I could reasonably negotiate with the messenger. I did reply “are you kidding me? this is meant to be the best place for neuro experts! “But he was advising me to continue with rehab etc. I did reply that I have already been doing intensive rehab for 6 months and I need treatment and I need your help! I have done exactly what the Drs told me to do at the beginning of the year and I have worked very hard to get where I am now but I have no quality of life! Please tell me Dr – if you were in my shoes, would you be happy with this? And he replied No. So how do you have rehab for something that you don’t have? No answer. You shouldn’t have to have this much rehab after a vaccine, if any at all?!!! I kept my cool and negotiated with him that it would be best then to go home to my family, which he agreed. I negotiated a discharge summary complete hard copy to myself and a treatment plan for rehab. I need this for my rehab team back home. He promised me he could do this by Saturday.
Late afternoon came and there was still no paperwork. The nurse contacted him and he said he was leaving and he would hand this over to weekend cover. I had already organised family to pick me up from the country. So very difficult seeing Drs, only the jnr drs are sent and I never felt like I was part of the process in my health care. Nurse was equally frustrated that the paperwork was not completed. Starting to think that I’ll never see any treatment plan. Afterall the Drs pushing rehab but getting a treatment plan proving to be difficult.
Note: I did not have recent MRI. Last MRI Dec ‘21
Day 10 – Saturday
AM - Same nurse as last night, trying to chase up said paperwork. The Dr came to speak to me but he was a cover Dr for the whole hospital. He was apologetic, said this happens all the time?? He told me that he couldn’t provide me with the discharge summary or the treatment plan because he wasn’t my treating Dr! I could see this was heading south to nowhere. This Dr was truly sorry and gave me his word he would follow up next week and collected my email. I also spoke about nil assistance with helping me with my face or pain. He sympathised because he knew what trigeminal nerve pain felt like. I explained I was constantly asking for help and management with my face. This just confirmed to me that I need to seek further help with my face. After this Dr left, another Dr appeared soon after but was neuro cover and I have never seen this Dr before. I simply asked him for the paperwork so I can go home, it was all arranged with the other Drs. He replied, well I can’t do that because I’m not your treating Dr!! I replied, “are you kidding me? why didn’t anyone communicate this with me? don’t you all communicate with each other? He said I’m sorry but there will be a letter sent to your GP. I replied “Yes, but NO. It's my paperwork and I already had this discussion with the Dr plus I need that treatment plan to take to my rehab team back home. I want to be in control of my health care and my own recovery including the paperwork. That’s not unreasonable!
He swiftly attempted to change the dialog and proceeded to lecture me about causes being stress and anxiety. I knew where this was heading, I’m not an idiot and put my hand up and said please stop. I know what you are doing, and you need to stop, I’m not interested in you trying to find anything in my life that you can pin on as the cause for my illness. It's not going to work. I became very loud and the ward would have been able to hear my anguish. The Drs are not listening. I said I do not have a mental health problem; I have a vaccine injury, but you brought it up. I just asked for my paperwork, but no one wants to sign anything! The cause of my illness is not negotiable. But now that you ask, I had the vaccine in the local clinic, had an anaphylaxis and left there in the back of an ambulance. I have never been the same since so how can I go from a healthy, active mother of 2 teenagers to a debilitating illness overnight. I saw red and I spoke out loudly, but he kept on going. I said are you serious? you are not listening! He replied, well perhaps this isn’t the right time to talk about it.
By this time, I just wanted to cry but I held it together. I stood up for myself and others injured like me and I had one last message: He tried shutting me down, but I said NO, please let me finish. You Drs have an obligation and duty of care, stop gaslighting people and start listening and helping people with vaccine injuries. Stop normalising pathetic excuses like stress, anxiety, mild reactions or blaming migraines or anything else. I have over 20 years nursing experience and what your telling me is not satisfactory. And not for lack of trying, I have already been doing exactly what I was told to early this year with intensive rehab for the last 6 months! This is unacceptable and incompetent. The Dr then got up and walked away. I was discharged with absolutely no paperwork, no discharge summary and no treatment plan for my rehab. They had no intention of doing this for me. End.
Was the Dr trying to bait me for such a reaction? The system is driving people to breaking point, but they can’t break me. Yes, I did react and I probably could have handled it a bit better but I felt like I was lured into a reaction that gave them reason to report I was abrupt. I asked him to stop and he didn’t. I’m not normally like that. I was displeased and stood up for myself. Any reasonable person in my position would have done the same. But this is the normalisation now. Drs are too scared to sign or even commit to a basic treatment plan or anything! Drs don’t want to deal with vaccine injuries, and they do what’s safe for them and gaslight people with no trace or accountability.
Sadly, I feel like I have just participated in a data collection for brain injuries post vaccine coupled with Drs having little knowledge in treating it.
