This is a personal journey where I share my why for starting to take my life back. This is a candid look at my journey through trying to navigate the healthcare system and the struggles I endured after a diagnosis of several autoimmune disorders, and Stage III Triple Negative Breast Cancer. Come with me on this very personal journey and see why this podcast was created.
Music from #Uppbeat (free for Creators!):
https://uppbeat.io/t/atm/follow-your-heart
License code: BRPNHWIB7Q1AG5YL
This is a personal journey where I share my why for starting to take my life back. This is a candid look at my journey through trying to navigate the healthcare system and the struggles I endured after a diagnosis of several autoimmune disorders, and Stage III Triple Negative Breast Cancer. Come with me on this very personal journey and see why this podcast was created.
Music from #Uppbeat (free for Creators!):
https://uppbeat.io/t/atm/follow-your-heart
License code: BRPNHWIB7Q1AG5YL
Episode 2
A personal journey
Welcome back to another episode of Nutrition is the Key to Health, and if you are joining me for the first time, I am glad you are here, my name is Alicia.
Disclaimer, I am not a physician, nurse, registered dietician, physical therapist, or mental health professional. This is my story and what I have done and learned over the course of my journey. If you plan to start a diet or exercise program, please consult your physician.
Ok, let’s jump in
What started me on this personal health journey, where I found that nutrition was the crossroad to health?
Here is a brief history:
At 19, I was diagnosed with epilepsy or seizure disorder but had the disorder since I was a young child. I was placed on a series of seizure medications.
In my early 20s, life happened and there was college, and work so I developed what I thought was a nervous stomach, but in fact it was IBS.
In my late twenties, I had some type of flare where it felt like all of my bones were broken and it would migrate to a hip, or shoulder or back. This was when I was first diagnosed with Fibromyalgia, my first autoimmune disease.
This was a newly discovered disease at the time. I thought, is this even a thing? No definitive tests and doctors thought patients were crazy when they would come into the office with complaints of pain. The rheumatologist put me on a series of antidepressants, steroids and valium. That was the protocol that was recommended for the treatment.
I soon went back to the rheumatologist complaining of falling asleep and low energy. The drugs were too much for my system. What happened next would make anyone scratch their heads. I left his office with a new script of valium for 10 mg. So, he increased my meds instead of decreasing them. He didn’t hear a word I just said. I threw the script away outside his office and this was my first of many discontents I would have with the healthcare system. No one was trying to help me and get to the root cause, they just wrote more scripts.
The neurologist I was seeing at the time, had me on a lot of seizure medications. I was falling asleep on my way to work while driving. It was like I had been drugged. I woke several times about to impact another car, or run off the road. I remember it was a Friday and I got to work without killing myself or someone else, and called the doctor immediately. I told him I was overdosed on meds and he told me to stop everything and come in to see on Monday. I did what he asked. After all, he was the doctor, right? Except, I never made it to Monday.
It was Sunday afternoon and we were all having lunch and celebrating my mother’s birthday. I went into status epilepticus or a back-to-back series of grand mals seizures due to abrupt medication withdrawal. This was the first time I had a grand mal-type seizure.
I spent over a week in the ICU while they were trying to get my meds corrected and the seizures stopped. After getting a new Neurologist, I was on my way. I was on several meds like Dilantin, Tegretol, and Phenobarbital.
When I got home from the hospital, I went into a massive drug-induced state from all the meds. I could only get up to the bathroom if someone helped me. I slept in a near unconscious state and I didn’t have any desire to eat. They sent me to a nearby University Teaching Hospital to a pioneer in electronic implants for seizures. I wasn’t oriented to place or time during his exam. I didn’t know who the president was, hell, I barely knew my name and I sure didn’t know what year it was. I couldn’t answer simple questions. He took one look at my meds and realized I was taking a lethal dose of phenobarbital.
The pharmacy had made a mistake on my prescription filling it and instead of 1 phenobarb 3 x a day, he filled it for 3 phenobarb 3 x a day, on top of two other seizure meds. I was told I was very lucky and that had I waited, I would have most likely gone into respiratory arrest at some point. At this point, I had no medical knowledge. I was just following the doctor’s orders. I mean after all, they are the one’s with MD behind their name. In this case, the doctor was amazing, but it was the pharmacy that screwed up. So check all your medications to the prescribed amounts.
Since being diagnosed with seizures, I began to loath medication and doctors, due to all the mistakes and mishandlings of my care. And, learning that I will have to take this medication for the rest of your life was not what a young girl wanted to hear. Knowing you could pass it to my child was terrifying.
I worked several years in a Level 2 trauma facility in the ER, so I learned a lot about medicine first hand. A saw a lot of different diseases and emergent situations and how they were treated. This helped a lot with valuable knowledge I still have today. I also took an EMT course at my local community college.
Years went by and I was working 2nd shift at a very large pediatric hospital, I had gone from a patient care setting into hospital supply chain. The only options for food was a vending machine or cafe that only served french fries, fried chicken tenders, chips and sodas. They had a captive audience.
They posted a sign outside the cafe that read, “We suggest you only eat from this cafe a maximum of once a week”. I always thought that to be a very odd sign. After about a year of this diet (which is the SAD), and high stress, I was at work one night in the racks picking orders because we were short due to call offs.
All of a sudden I noticed that I was having difficulty walking. I was telling my brain to tell my leg to walk, but my legs were not following suit. There was a disconnect. I began transposing numbers and picking the wrong items. I was having a difficult time talking. I thought I had to push through this, we have work to do. One of my guys thought I was drunk. It just kept pushing myself.
I finally stopped and made it to the restroom to splash cold water on my face and noticed that my face was flushed and one of my pupils was blown and not reacting. I went back and grabbed one of my guys and asked if he would help me get to the ER just for a blood pressure check.
I grabbed one of the nurses and was trying to ask if she could take my bp, but I was having trouble speaking. My pressure was off the charts. I wanted to go home but she refused and grabbed the doctor and they admitted me from the Pediatric Facility where I worked, to the Adjacent county hospital that was connected. They wheeled me under the tunnel and into the ER.
After many tests, I was admitted for a level III stroke and placed on the stroke unit. I had weakness on one side of my body. They ran test after test. They ruled out seizures, and other diseases. Days later the attending and team were perplexed. They called in a specialist. None of them agreed on any course of action or diagnosis.
They ran a panel of nutrient tests and found that I was hugely deficient in sodium, chloride, potassium, vitamin d, b-12, folate, and multiple others. They hung iron, magnesium and potassium. I got b-12 shots daily and vitamin d. Hours after administering the vitamins and minerals, my symptoms began to clear. My double vision cleared, my speech was returning and my weakness was starting to fade. They diagnosed me with “complex migraines” and released me and told me to follow up with my neurologist.
I wasn’t back home one day and they called me back saying the MRI result showed possible lesions on the spine and I needed to return at once for a lumbar puncture for suspected Multiple Sclerosis. I did. Never let a want to be a doctor in training give you a lumbar puncture. It was a traumatic 45 min very painful experience. My blood pressure was off the charts. I told the attending to take over or I was out the door. When the results came back negative, I deduced that I was likely one of the few in the hospital that had insurance and they were most likely billing all they could.
I took all my EEGs, MRIs and CT scans to my neurologist. He insisted it was seizures and I knew it wasn't. Once I got a seizure, I developed an “aurora” just prior to the seizure. He wanted to put me on medication for a vast number of things. I didn’t want any more meds. By this time, I was insulin resistant, with a high glucose, my weight had skyrocketed due to the Depakote, I had developed asthma and was on inhalers. I was on blood pressure meds and Byetta shots to try and control my glucose, along with all the neuro drugs.
I told him I wanted to try and do this by changing my diet, and adding supplements, since it appeared to be nutrition related. He walked me to the door with his hand on my back actually, and said, “good luck with that”.
It was at this moment, I saw the connection between nutrition and health for the first time. It was also at this moment that I realized that mainstream doctors pushed meds over diet correction. My journey and quest was born. I knew one thing, if I didn’t get off this freight train, I was about to hit a very dangerous wall, going very fast..
I started looking at all my deficiencies, I made notes and built a diet plan and got supplements. I read every book I could get my hands on and scoured the internet. I watched things like “Sick, Fat and nearly dead”, and read the China Study. I changed my diet and I lost a ton of weight. My diet was green smoothies with protein, a Lara bar with a handful of nuts and fresh fruit. I took chlorella, spirulina, vit b complex and continued with magnesium and vitamin d daily, and B-12 injections. I took a multi one a day with iron, and ate veggies, and fresh fruit.
With all the weight loss my meds needed adjusted. My Byetta shots I was doing to control my sugar, had to be discontinued. Since I lost all the weight, my blood pressure was low and I was getting dizzy. My blood pressure meds were discontinued. I saw a correlation between weight and blood pressure for the first time. Now I had the opposite problem. I was being told that I was too skinny and that I should eat more. I agreed, I looked gaunt and unhealthy. I made a caloric intake correction and cranked through life feeling great. My inflammation lessened and I had more energy. I no longer had 40 meds to take both daily and PRN. Those were coming down one by one.
Life happened and I began hitting the drive-thru and eating the Standard American Diet again. Dairy was huge for me, and sodas were frequent. My weight came back as did my high blood pressure. The pills mounted again, and so did additional autoimmune diseases. They just kept coming.
I thought I had lupus all the symptoms were there, but because I didn’t tick a positive ANA, the diagnosis was never given. However, my kidneys, skin, heart and lungs were being affected. The issue with autoimmune disease is this. There are so many overlapping symptoms with all the diseases, it is hard to get a correct diagnosis. It is not uncommon for a patient to go five years being misdiagnosed by any Rheumatologist. Due to flares, I was in and out of multiple high-dose steroid treatment cycles. I was given methotrexate and biologics that act like daily chemo pills, keeping your immune system at bay. These are dangerous drugs.
Then one of the worst flares I had ever had hit. I would fall getting out of bed, standing in the kitchen and even taking the trash out. I hit the payment many times. My legs would just give way and I was down. I didn’t know what was going on. I went to a neurologist that was certified in electrophysiology. He diagnosed me with Myasthenia Gravis and a new regiment of additional Plaquenil and high dose steroids ensued. I was taking 60 mg a day. The weight packed on again. I got north of 200 lbs, and I was a small frame.
I tried diet and exercise and I was unable to plateau. Three and a half years into my diagnosis, I had another flare. Each flare was worse than the last. This one was so bad, the neurologist took one look at me and said he could no longer treat me that it was beyond his scope and told me to get into the teaching university ASAP.
It took me 6 months to get into the university hospital and I was told I did not have MG. I couldn’t continue at the facility because I had lost my job due to being ill and had no insurance. The one test she did run was a B-1 and it was off the charts. She said the steroid regimen and all the b vitamins could be causing the muscle weakness, so I stopped everything by titrating, but my seizure meds and a few others.
That was when I learned the hard way, that neutraceutics or vitamin supplementation, can be just as dangerous as the deficiencies themselves.
I knew I had to retreat and start back at square one. Which I did. I consumed massive amounts of PubMed and peer-review studies. I looked at sites like Mayo, John Hopkins and Cleveland Clinic.
After all of this, the last thing I wanted to see was another white coat, so I chose to miss my mammogram in March, since the others had all been clear. However, my cat began to take an interest in my left breast. She would get a cat scan each night while I read. I would push her away and she would come back. She would reach out and touch the same spot on my breast each night. I pushed her away and told her to stop. That is when she jumped on top of my chest and it hurt so bad and came up out of bed screaming. The pain was awful. My hand went directly to my breast and that was the moment when I felt the mass. It was so close to the chest wall, I would have never felt it. My cat may have just saved my life.
I got in for a mammogram and I wasn’t back at my house 15 minutes when the nurse called me and asked if I had ever had cancer. They told me I needed to return for an ultrasound, which I did. The radiologist came in and told me I had a suspect mass and I needed to find a surgeon for a biopsy, sooner rather than later. He emphasized not going to a general surgeon but an oncology breast surgeon to save time. I had been around doctors all my life. Radiologist can’t give you the diagnosis without a biopsy, but they know, and I had cancer.
The ultimate outcome through a long struggle trying to find a surgeon….Stage III Triple Negative Breast Cancer with node involvement.
I had finally hit that proverbial wall, going at a very high speed.
I lost my mother to lung cancer that had metted to her brain and spine. I knew I was in the ride of my life, with chemo, surgery and radiation.
My cancer journey was long, dark, very difficult and lonely, but I am here to tell my story.
My health journey through nutrition just got even more desperate.
I researched all diets and have now chosen a whole food plant-based lifestyle. I have just begun and have a few months under my belt. What I know is every time I revert to the SAD diet, disease ensues. When I eat plant-based food, things improve. The correlation is there and I am living proof. We are what we eat and Food is medicine. All of those cliches you hear are true.
So what was my outcome of being on a PB diet for only 60 days (2 months)?
You cannot get those results even with medication my friends. Food is medicine, and if you are choosing to pop another pill instead of addressing your diet and habits, well that comes with a cost, and that cost could be a diseased state or worse, death. Wake up and look around. If this doesn’t encourage you to make the switch, I am not sure what will.
God gave us one life and one body, we don’t get a do over. So stop eating the Standard American Diet, it’s killing you!
No matter what lifestyle you choose, if you smoke, stop. Cut your sodium intake today. These two things are the gateways to death. I never smoked, but my mother did and I saw how it ended for her. You do not want to go down that road, trust me.
I found some resources that are wonderful and they helped me on my journey. I want to share them with you. This is not an all-inclusive list but just a few
PCRM.org (website and YouTube) Physician’s Committee “The Exam Room” with Chuck Carroll and Dr. Neal Barnard is my go-to
YouTube in general search “whole food plant-based diets”
PB and J this is a small YouTube out of Toronto. Jeremy is great. He reviews all the cookbooks, so you can decide before you buy.
Dr. Michael Gregor’s “How not to Die” and “How not to Age” Peer-reviewed studies nutritionfacts.org
Dr. Esselstyn
I hope you found my personal journey to be useful in some way.