Mindy-Lee’s traumatic story begins in 2020 after a flu vaccine, then further continues through 2021 after her Pfizer vaccine, which resulted in existing symptoms being exacerbated, along with new symptoms.
I’m 42 and a single mum of 8 year old twins and a 21 year old daughter (and have a 5 month old grandson).
From a health history perspective, when I was 10 I had a couple of seizures. Results from a CAT scan back then showed that I’d had more electricity on one side of my brain. I was prescribed Tegretol which I was supposed to take for life but took myself off it at 16, I’ve never had another seizure since. At 26, after years of chronic stomach pains and heavy periods, I had an operation to remove ‘diffuse’ (stage 5) endometriosis and was told I had secondary infertility but ended up with a set of twins 8 years later! After having the twins, I had horrific pains again, I had the Mirena fitted 3 years ago, my periods have ceased from that, and I’ve had no issues since. I also was a casual smoker until October 2020.
In 2020 I worked as a chef for a company with 200 + staff. It was the first job I’d had that I loved, and it was somewhere I felt appreciated. I also did catering jobs in the weekends. I was going to the gym, doing bootcamps and walks around the hills with friends and my kids, and had done some inner healing and breath-work. I was the best I’d ever been, and loving life.
The company I worked for had organised the flu vaccine onsite in May 2020. I’d not had one before, so I spoke to my family about it and as the world knew of covid at the time, I didn’t hesitate to get it, along with many others.
I had the flu vaccine administered on 24th May 2020. Within weeks issues began. I developed sinus issues (having never been a sufferer before) and became super sensitive to smells. I had pain behind my eyes & nose and had headaches. I also developed pains in my feet, biceps, and an aching back. I was getting rashes on my face and would often have colleagues come and tell me I’d had a rash come up. My appetite changed, and people would be telling me I needed to eat, but I felt nauseated and dizzy. As I was making other people food, I was especially conscious of this and was living on nausea pills (ondansetron). I then started getting continuous UTI’s (which I hadn’t had in years). I had a phone consult with the doctor and was prescribed antibiotics. The first, or second lots didn’t work, so I went back, and they tested my urine and prescribed something different, which gave some relief. I’d been in severe pain but was still working. I didn’t want to let them down by calling in sick. I didn’t know what was happening to me and just thought my body was packing up due to age, as I’d turned 40 a few months before.
On the 17th of October 2020, I went to a Gypsy fair, then to have a facial. I got a last minute invite to a concert that evening which I said yes to. Even though I felt tired, I thought it was enough to cope with. We went for pre-concert drinks, and I had a pain in my chest and had become short of breath which was unusual (I’d never been asthmatic or anything), I couldn’t inhale a cigarette and struggled to swallow my drink. My friend gave me her inhaler to try, it only slightly helped. In the foyer prior to the concert, I felt nauseous and like I was going to pass out, so I rang my mum to pick me up and drop me home. At home I was freezing cold and had packed on the clothes. My babysitter (my cousin) noticed my lips were blue and purple and knew something wasn’t right. She was concerned so rung my dad and my daughter, they both came over and ended up calling an ambulance.
As well as the chest pain and shortness of breath, my BP was really low, temp through the roof. I wasn’t really conscious so don’t recall much of what happened, but when I first got there they said they were treating me for a blood clot and gave me an injection in my stomach (an anticoagulant) and I had someone monitoring me the whole time in A&E.
My aunty was bought in the next morning with a suspected heart attack and my cousin (her daughter) came in to see her and happened to see me a few beds down. She took one look at me, walked out of the room, and rang my mum. I had oxygen but could barely breathe and couldn’t talk. She told mum something wasn’t right and to come, so she did.
Mum waited around until I was moved into a ward and had just left when the doctor came in to see me. He told me I had a large mass in 1 lung, and a nodule of small mass in the other one. I said to him “what are you saying?”. He said, “I believe you have lung cancer” I was like, “What did you just say?!” I rang my mum to come straight back and got him to repeat what he’d told me. He said, “Whatever it is, it’s growing rapidly”. My mum and I were in shock. I thought how can this be?! I lost myself at that point, I couldn’t comprehend it and My mum was a mess. My mum requested for me to be moved to another ward on my own so my family could be with me, my eldest daughter stayed with me that night but in the early hours of the morning I woke up to my name and opened my eyes to see multiple medical staff around me. I noticed I had multiple IV lines in both arms, but I couldn’t stay awake. They had the rapid response team me attend and my daughter told me they tried to bring me back – I’d taken a turn for the worse. When I came to the next day, they told me they were amazed I was still alive. Being in such distress the night before after being told I had lung cancer, my mum asked for a sleeping pill for me. The next day, the nurse who had given it to me came and apologised – she’d felt really guilty about giving it to me for some reason, but I never understood why.
I was discharged on the 21st of October 2020 and diagnosed with Sepsis Pneumonia, and a secondary diagnosis (the following is on the discharge notes) of ‘mediastinal/Hilar mass, 4.5 x 3.2cm and irregular’, ‘Bilateral interstitial lung in LN enlargement’ and ‘ECH showed sinus tachycardia at 115bpm’. The shock from all this made me give up smoking.
My workplace was amazing when they found out. They paid for groceries for my family, and my bills over these weeks and were extremely supportive.
I went for a chest scan, and a lung function test 4-5 weeks after discharge (late Nov/early Dec 2020) to see if the pneumonia had cleared and further investigate the cancer, then attended the appt at the clinic with the specialist. I took my Godmother and my mum. The specialist proceeded to tell me that whatever was on my lungs showing in my hospital scans in October had mimicked cancer, but wasn’t cancer (I’ve had multiple medical professionals tell me the same thing after seeing my scans and showing me that it was just like cancer). We were very confused, but also felt a huge sense of relief. He said that I was very sick and my case had been bought up within medical teams with some asking how I was doing, as they didn’t think I was going to pull though. I was told the sepsis pneumonia can take up to a year to recover from. The specialist also advised I’d developed Asthma (I’d never had issues before).
I recovered enough in December to gradually build strength with working a few hours per day, working up to full time hours in February, but soon after this, exhaustion kicked in. I could barely stay awake for my job and the pains started up again. As things got worse over the months, I would bring leftovers from work for the kids for dinner, make something easy or they’d have cereal. I started getting UTI’s and my appetite went again. I couldn’t look after my kids or myself and was back to the doctor after getting chest pain again.
It was getting harder and harder to wake up in the mornings and I thought wow, something serious is really going on and by on 2nd August 2021, my eldest daughter was visiting and called an Ambulance. I was admitted with low BP, high heart rate, high temperature chest pain and short of breath again but not as bad as the last time (I had thought the pneumonia was back), but everything came back clear. I was then put under an Endocrinologist. He’d thought my body wasn’t producing hormones – my thyroid results and bloods were all over the show. Every time I’d presented to the hospital, or had blood tests, it showed I had an infection in my body, but they don’t know where. I had Hydrocortisone via IV and within 15 mins I was awake and alert, able to eat and shower – but then my body would use it up and I’d crash again within 1/2 a day. I was in hospital for a week while they were investigating it. After the 3rd day, he thought I had Addisons disease. He tested for this, but my tests came back negative. They waited until my BP had increased to normal levels and discharged me on the 7th day. At home, I was on hydrocortisone morning and night, but it was wearing off, so my dose was increased and then I started coming right. I went back to the endocrinologist for a follow up in early September 2021, and he diagnosed me with Chronic fatigue. I got a book from the library to see what I could do to help myself, but I knew that this wasn’t the only issue. I’d also wanted to deal with it more naturally, so a few weeks prior had gone to a natural health shop, and they made up a remedy/supplements based on my symptoms. I told my endocrinologist who said not to take it or any supplements as my system was already in overdrive (I’d taken it for a few weeks and had been feeling worse). He gave me the ok to go back to work a couple of hours per day though.
Due to my health, covid was scary for me and I was told that if I was to catch it, my chances of survival wouldn’t be great and eventually, I would have had to have the covid vaccine for work anyway. I had the Pfizer vaccine on ‘Super Saturday’, the 16th of October 2021. As it was being administered (in my left arm), I felt an electric shock feeling down my arm and across my chest. My friend who came with me and got it at the same time said she felt a bit funny but didn’t have the electric shock feeling. I believe that because I’d been on such a high dose of hydrocortisone at the time, that it may have counteracted any effect I might’ve had on the day. On Monday morning I couldn’t get out of bed. When I did get up, I couldn’t walk, I was really dizzy and felt like I was going to fall over. My legs were numb and going out from under me. I had pain throughout my body, felt nauseated and couldn’t move or lift my right arm. I had a burning sensation from the bottom of my feet to my head, but my right side was worse, I’d had a sense of things crawling under my skin too, it was horrible (I still get this now) and made me feel itchy.
I got into the doctor the following week and was still in a pretty bad state. She believed it was Myositis (Inflammation of the muscles from infection, injury, or autoimmune disease), however the test came back negative, which she was shocked by. She took me off the hydrocortisone and put me on Prednisone instead. My mum was convinced I was depressed, but my doctor told her quite clearly I was not showing signs of depression and my body was not well and struggling.
Mum came with me to the endocrinologist in December 2021. He told me I had deteriorated since he last saw me and thought it was due to the vaccine. He told me a nurse he worked with was experiencing the same symptoms as me, and he was going to try to get me an exemption. I left there thinking he was going to be great, but I never heard from him again. My doctor requested the notes from my appointment with him, even ringing the clinic while I was there – they said there were no notes other than I’d checked in on the day. He’d sent me for bloods afterwards to check thyroid/cortisol levels and there was nothing noted about that. He wanted to have me tested again for Addison’s.
I was on prednisone for quite some time and have come off it now. I’ve been on so many different medications, nortriptyline was another that helped me sleep and with nerve pain in the muscles (in my arm), I’m now only taking Venlafaxine to help.
In early May 2022 the Rheumatologist did an ANA test (Antinuclear test that can detect autoimmune) which I tested positive to, he checked for lupus which came back negative.
I’ve had a lot of moments where I didn’t even want to be here because of the pain I was in – I couldn’t even go to the letterbox and back without being out of breath. I’ve had many nights being scared to go to sleep, as I thought I was going to die. It’s been a tiring, isolating and painful time. I haven’t driven myself anywhere for a very long time, I don’t know what my body will do so don’t want to risk anyone’s lives. I haven’t really been able to go anywhere in the last year (not even the supermarket). I desperately wanted to go down to Wellington to be with my daughter and her partner when my grandson was born, but I wasn’t able to go anywhere – I get exhausted, out of breath, rashes, tremors, and extreme vertigo, which is really embarrassing. I have so many symptoms! I break out in hives when I eat anything, my memory is gone, my hair’s falling out, I have constant chest pain, even just walking around the house. I get palpitations and feel like my heart stops/skips a beat and my breath stops at the same time, and I wait to catch it again (It even happens while I’m sleeping, and I wake up from it). I can’t cook a meal without feeling like I’m going to faint, I can’t sit in the sun without feeling nauseous and my breathing getting triggered (showers also do this to me). I can’t feel temperature anymore which was always something I used to notice – I used to always be the cold fish in my house and hated winter, but in the last month or so I’ve noticed I sweat a lot under my arms and my back gets boiling hot, but I can’t feel it. About 6-7 weeks ago, the kids went through a period of sickness, and were prescribed antibiotics, and I got the flu (not covid). All my symptoms were heightened, and I haven’t come right since. I’ve been having a freezing cold/burning sensation that goes across my chest, which feels like getting into a hot bath on a cold day. The tremors are just coming out of the blue. I had gone to watch my son’s soccer a few weeks ago and was walking across the paddock (which was hard work), my arms, legs and fingers were shaking (tremors) – it was so embarrassing. A friend thought I was having a seizure. My eyesight has deteriorated, reading gives me vertigo and movement of anything on a screen, my grandson in his rocker, noise, smells, movement, or being in the car all make me feel sick. My daughter can be washing her hair in the shower and the smell overwhelms me and I feel nauseous – deodorants, perfume and even smells coming from the neighbours affect me. I break out with hives and rashes. I’ve been told I can take up to 4 antihistamines a day for this (I’ve been having one a day).
My doctor prescribed omeprazole for the nausea, but I don’t take it as I’d rather know what’s going on in my body.
Financially, I’ve gone from earning a decent wage, to being on the benefit. I’ve had about 10 ambulance call outs since 2020, my bill is currently approximately $1000 (it’s around $98 for a callout each time). I’d had many trips to hospital, but I don’t go there anymore as I’m scared of getting covid, and of being told the same thing over and over, not being listened to, and x-rays and bloods coming back clear. When my breathing is bad the paramedics check my vitals, treat me, and wait with me until I stabilise. They don’t have any answers.
I went to my doctor last Friday (who has been amazing), for a follow up appt from the Neurologist telling me I have a prolapsed c6/7, she said lots of people have this and it’s not a big concern. She told me I’m vaccine injured from both the flu vaccine in 2020 and the Pfizer vaccine in 2021 but there’s not a lot more she can do – they’ve tested and treated me for almost everything western medicine wise, and that what I have is unidentified autoimmune and she thinks we may not have answers for up to 20 years. She recommended I go down the alternative health road and she’d be working on an ACC claim for me. (I wanted to cry – I felt both validation but also hopelessness).
I’m having some specific blood tests to investigate Addison’s (adrenal insufficiency) disease again, as one of my test results said they couldn’t rule out whether it is or not. The testing they did on me was not as stringent as others on an Addisons group I’m on, who have had diagnosis. I’m picking up a heart monitor tomorrow to wear for 7 days too.
I’ve been so grateful for having amazing support from one of my friends and my Dad, this whole time being there for me and the kids. I couldn’t have done it without them.