Enduring Chronic Illness~My Journey


Hello friends, I am so grateful for you taking the time to read my story, or donate.  And even those who can't, just for sending love and positive energy my way. I know a lot of people are struggling with money right now and I promise when I am healthy again I will pay it forward with this gift I found in my health struggles, the one that has been stifled for so long now.

I am a personal trainer and I feel I was put on this earth to help heal people. It is my passion and my purpose but I had to learn how to heal myself first. On this journey I have learned SO much about health and the human body/mind/spirit connection. I can use that to help my clients and others become healthy, fully human, to see their transcendent divinity, see their innate power. I can help them to see themselves as I see them: perfect beings worthy of happiness. And as beautiful souls filled with love, light and potential, powerful beyond measure. I see YOU, I see you in your vulnerability, you are amazing and if you dont feel it within yourself yet I will continue to remind you how powerful you are until you can see yourself and your worth the way I do! This is what I gained from these health struggles. I have empowered myself from struggle to strength and now it is my gift to share with the world. May we all see our innate beauty and love ourselves fiercly and tenderly. As humans it is in our essence to connect, to embody love and to give love to others. You are already that, you just forgot because of learned behaviors and societal archetypes. Take my hand on this journey, together we rise!

I have had an arduos journey the last 9 years in regards to my health. I had a toxic exposure at a restaurant I worked at for 3 years. The exposure was to a gas called Hydrogen diSulfide gas (sewer gas- that rotten egg smell) and there was also raw sewage back-ups weekly which= viruses, bacteria, fungus, parasites etc. That gas destroys your mitochondria which means cellular death, it causes brain damage, lung damage and can kill you in high enough doses.

I had to have 3 major surgeries because of the exposure, brain surgery, heart surgery and another general surgery. In May of 2016 I was diagnosed with many nervous system disorders from a chronic viral infection I picked up from the exposure to raw sewage . Ive had 3 others doctors suggest I have MS as far back as January of 2014 but it turned out to be dysfunction across my entire nervous system. I have had many viruses and bacteria found from different tests that were run over the years. It was the Coxsackie B virus ( I have every strain of it: B1- B6) that attaches to your nerve roots and attacks and destroys them, this caused such rampant inflammation in my body that eventually I developed  demyelination/dis regulation of my entire nervous system:CNS, ANS, sympathetic and parasympathetic.

I had brain surgery March of 2014 to remove a large cystic pituitary tumor which was a really hard, painful surgery to go through, especially with the complications I had. I was told that the tumor was likely there from an early age but it never caused me any problems until I got sick from my job. So my doctors are saying due to the high level of inflammation in my body that it caused it to grow rapdily and started causing chronic headaches and for me to start losing my vision. They said it likely would have never caused me any problems had I not worked there since I was asymptomatic for 35 years. (** If you would like to know more about the brain surgery see below at the end of the story**)

I also flew to Atlanta, GA Jan of 2015 to have my breast implants removed. They wouldnt have caused me any problems on their own but the exposure caused a whole cascade of problems and auto immune issues so I needed to remove any foreign objects from my body that my dysfunctional/low immune system could attack. During that surgery I had to have 7 black enlarged lymph nodes removed, and because of the toxic exposure causing hormone imbalance I developed fibro cystic disease caused by estrogen dominance. I had to have some of the cysts removed too. I just learned that the fibro cystic disease is a result of Polycystic Ovarian Syndrome which is also the cause of the 3" ovarian cyst that ruptured in 2014 and uteran fibroids diagnosed in 2015. This surgery was one of the hardest to recover from, I wasnt me, I felt like I was going crazy because I had so many central and autonomic nervous system problems. (CNS and ANS) I was having an extreme increase in the auditory and visual illusions, tons of pain and pain and fatigue. My nervous system was so on the edge that I couldn't handle people sweeping, or trees moving, or shadows. Everything set me off. I came to learn in 2016 that this was sensory processing disorder, but I had had it since 2013.

Ever since brain surgery I was starting to isolate myself more, losing self confidence, and not feeling comfortable being around people at all. So there were months at a time where I was in bed most of the time other than doctors appointments and errands. These were the darkest times of my life, these were the times that I was in so much pain and so exhausted that I wanted nothing more for it all to end. I did not want to live another day suffering like this. I fantasized about killing myself all the time. I would have some good pockets from time to time but from March 2014 until July 2016 ending my life became a more and more desirable option for me.

In Nov of 2015 I had heart surgery, known as cardiac ablation, where they were trying to stop these arrythmias I was having. They spiked my heart rate up to 214 beats per minute and were making me pass out. If they didnt make me pass out they caused chest pain, shortness of breath, and anxiety.  For the surgery they go in with 6 wires and find the spot in your heart thats mis-firing and they burn it to destroy the heart tissue. Surgery was a success but I still have other heart problems that surgery couldn't address such as: Postural Orthostatic Tachychardia(POT syndrome) and Premature Ventricular Contractions(PVC's) which happen a lot and are very unpleasant. POT syndrome and PVC's cause chest pain, shortness of breath, low blood pressure, high pulse rate, tremors, palpitations and anxiety. Same as with the arrythmias but at least now I only have 2 things causing those symptoms instead of 3.

(I now know the following is from having the nervous system disorders from the virus and some from sensory processing disorder even though I wrote this years ago):
The newest medical findings are that I have multiple degenerative nerve diseases; small and large fiber demylinating neuropathy and autonomic neuropathy which shortens your life expectancy. Its debilitating really because my nerves are dying and it causes me excruciating pain, loss of muscle strength, coordination, sensation etc, and the nerves that control my heart, eyes, digestion, bladder and veins are also affected causing me problems with all those areas of my body. Ive also got brain damage from the chronic toxic exposure. I have a lot of neurological problems, visual problems and my doctors believe I'm having visual seizures but we havent been able to confirm it with any testing yet.

I have been having auditory and visual hallucinations(not psychological, its from brain damage) for over 3 and a half years now.I have blurry and double vision and I cant process what I'm seeing because my visual cortex is "severely" damaged according to my doctors. I cant be out in public without wanting to freak out sometimes because of the hallucinations. All the sensory (visual and auditory)stimulation is multiplied by 20 in my head because I have developed a severe sensory sensitivity and these are the things that trigger my CNS and ANS to overreact like a "fight or flight" response from the Amygdala. Im having essential tremors.  I have "severe" damage to my precuneius which rules the frontal lobes of your brain and is responsible for executive function,and there are 13 other "broadmann" areas of the brain where I have signifigant damage.  I deal with chronic pain and fatigue and I am becoming less and less functional with the majority of my time being spent in bed. Ive got major digestive problems,  as well. Pretty much every system in my body has been affected.

I have been having trouble with the doctors at USC figuring out how to help me get better, they were able to make tons of diagnosis but not help me improve, so I felt I needed to step outside of that hospital and seek care elsewhere, but the doctors who are helping me dont accept my insurance. I need your help to be able to get well, this has all been such a burden on me, mentally, physically and monitarily and I dont know what to do anymore. Sadly I'm losing hope...( mind you I wrote this part of the story a few years ago)

After all the testing one of my neurologists did over a year ago, balance, sensation, coordination, EMG's, EEG, MRI, CT Scan... he found that I had the brain tumor, calcification of the carotid arteries in my brain, abnormal labs and a degenerative nerve disease : mixed axonal and demyelinating sensorimotor polyneuropathy. "mixed" meaning both because one destroys the axon and the other destroys the myelin. Sensory meaning skin and motor meaning muscles, and poly meaning multiple, and neuropathy just has to do with a malfunctioning of your central nervous system. This ALL makes sense now when I link up all the symptoms I have been having since the beginning of 2009 and how they have progresssed and lately I have been deteriorating on a much quicker level. I am also noticing that even though I was forcing myself to exercise to try and stay healthy, I was buidling no muscular tone or strength. This is all really scary because I do NOT want to end up  in a wheel chair ravaged by this disease. Unfortunately it is "chronic" because Ive had it for many years now.

I have a "sick" liver because my MTHFR C677T gene has a double mutation(homozygous) which means a part of my liver can only work at 10-15%. This is part of the reason why Im so sick because that part of my liver thats impaired produces enzymes that regenerate your mitochondria. The H2S gas kills your mitochondria and since I cant regenerate them efficiently thats why I have been having such a hard time with this. Also I have a lot of other Methylation and COMT gene mutations that affect my neuro pathways which is another reason I have so many neurological issues after the toxic exposure.

Since I had pre-existing medical conditions no one would insure me.So from 2008-2014 I had no insurance and paid for what medical care I could afford. For 8 years I've struggled every day to get through, to try and work, to be able to be function, to try and climb, which was the only thing I loved SO much that I could force myself to do on my better days to get any sort of exercise and joy in my life. Ive accumulated a lot of medical debt, I'm at 75,000 thats just doctors, not every other expense Ive accrued or my lost wages from being on disability. In January 2014 I was very excited to get on Obama Care, I ran up 500,000$ worth of medical care in 2014 and 400,000$ in 2015 .

For those interested in the story about the brain surgery I had:

They went in through my nose to removed the cystic tumor to stop it from crushing my pituitary gland and from lifting up my optic nerve and optic chiasm. There were some complications and when they removed the tumor my brain fluid began a "very large " leak from my nose so they had to cut a 3"'long incision in my thigh to use fat, and fascia to plug the leak. After a complication like this they don't want your brain to swell so I had a lumbar drain in my spinal cord for 5 days supposed to be draining 10cc's of brain and spinal fluid to reduce cranial pressure. But it wasnt working right so it was only draining 5cc's and the nurses didnt tell my surgeon for 3 days so my brain was swelling really bad. Most excruciatring thing ever, felt like every bone in my body was being crushed at the same time, like my skull was being crushed in a vice and my eyes were popping out of their sockets. I could not breath through my nose which was miserable and had to take sips of water from having severe cotton mouth and a sip would make me throw up,. For 3 1/2 days I ate nothing and threw up blood at least 10 times per day. I couldn't sleep because I was in so much pain and I was hooked up to so many machines. Finally day 4 I tried eating applesauce, fruit and chicken broth which I couldn't keep down. Day 5 I ate the same as the day before holding it down for a few hours but still throwing it up. I was discharged day 5 and went 1 week straight not being able to hold anything down.... Still tons of pain, weak, can't see much, can't handle loud or bright anything but I will overcome all of this!!! Hardest thing Ive ever gone through but I will get through this too!

For those of you interested in reading about the technical stuff: Here is from the report Dr Turner wrote on the brain damage he saw on my QEEG and below that is the story of my stay in the ICU after brain surgery: - Cz diminished power 1 Hz: Possible indication of chronic/inadequate quality and/or quantity of sleep.

- O2 (right occipital) elevated power 4-5 Hz: PROCESSING & ANALYZING OF VISUAL INFORMATION LEFT HALF OF VISUAL SPACE; Analyzing visual information from left half of visual space; Visual-spatial processing; Edge perception; Movement; Pattern recognition.

- Fp1 (left frontal-polar) elevated power 13 Hz: ) ATTENTION (LOGICAL / DETAIL ATTENTION)
Attention / Concentration / Focus problems; Planning / Executive functions problems; Initiate response / Evaluate response problems; Visual working memory problems; Verbal episodic memory retrieval problems; Task completion / Organize responses problems; rigidity of focus; moodiness, irritability, conduct D/O, ODD;

- Fp2 (right frontal-polar) elevated power 4 Hz: JUDGMENT (EMOTIONAL/CONTEXTUAL ATTENTION); Decision Making problems; Modulation and inhibition / restraint of impulse problems; Judgment problems; Sense of self problems; Self / impulse control problems; Verbal episodic memory problems; Avoidance behaviors problems; Hyperactive, impulsive (tactless), anxiety, poor social awareness.

- C3 (left central) focal elevated power 5 Hz: SENSORIMOTOR FUNCTION (handwriting) & INTEGRATION (pain,touch,vibration) of RIGHT HAND; Cognitive processing problems; Cognitive processing problems; Alerting responses problems; Short-term memory problems; possible poor handwriting problems;

- C4 (right central) focal elevated power 7 Hz: SENSORIMOTOR FUNCTION (handwriting) & INTEGRATION (pain,touch,vibration) of LEFT HAND; Calmness/calming problems; Empathy problems; Short-term memory problems;

- T8 (right temporal) focal elevated power 5 Hz: EMOTIONAL (NON-VERBAL) MEMORY; Emotional / autobiographical memory problems; formation & storage of Short-term memory problems; Music prosody/musical ability problems; Personality problems; Organization problems; Hearing problems;
anger, sadness, aggression; tone of voice interpretation problems;

- P8 (right parietal) focal elevated power 5 Hz: EMOTIONAL UNDERSTANDING; Social clues problems; Emotion awareness problems; Facial & symbol recognition problems; Motivation problems; Auditory processing problems; Long-term memory problems; poor memory for faces & melodies;

Clinical correlation is required.

Robert P. Turner, MD
Network Neurology
1941 Savage Road, Suite 100-E
Charleston SC 29407

If you are interested in knowing more about my other health struggles (yes theres tons more I DIDNT list) from the past 8 years due to the toxic exposure at my place of employement, message me, Ive written a lot about them and can send any info you are interested in. I also have letters, tests,photos etc that corroborate my story if anyone is interested. Much love and light my friends!
In solidarity, Dawn
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