All the great stories start with the dark moment in their journeys – their rock bottoms.
All Great stories start with the dark moment in their journeys- Their Rock Bottoms
Eat, Pray, Love starts with her crying in the middle of the night on the bathroom floor- crying out to God.
Les’ Miserables starts with the story of Jean Val Jean getting out of prison and being ashamed after he steals from a man who clearly deserved anything but to be stolen from, a dark and shameful moment for any decent person.
And my story really began the same way. It was August, 2014 and I was 38 years old. I had just gotten married for the first time three months before- my marriage was a time of celebration and living life to the fullest- and months later my husband found me on the floor multiple times- unable to make it to the couch before my body gave out. Just a month later, he would be sitting with me in the hospital, because we were too afraid for me to be left alone-
During that week, I was scared that this was the end of my story. Little did I know, in those dark moments, that my story was just beginning….
While it was not the beginning of my health decline- it was the beginning of my story- the turning point when the story really began to take off. But first let me give you a quick synopsis of what led me to that fateful turning point…
…In 2003 when I had my first bout of Chronic Fatigue Syndrome (CFS). I was abnormally exhausted, couldn’t heal after workouts, couldn’t wake up in the morning and felt like a microwaved corpse all day. This was more than just tired. In 2009 I suspected I was Celiac. But thining I didn’t need a doctor to tell me to stop eating bread. I went gluten free, took the bun off my burger and moved on. No symptoms, no problem (or so I thought).…In 2003 when I had my first bout of Chronic Fatigue Syndrome (CFS). I was abnormally exhausted, couldn’t heal after workouts, couldn’t wake up in the morning and felt like a microwaved corpse all day. This was more than just tired. In 2009 I suspected I was Celiac. But thining I didn’t need a doctor to tell me to stop eating bread. I went gluten free, took the bun off my burger and moved on. No symptoms, no problem (or so I thought).
But it took something much great to make me really begin- begin a healing journey, begin to search for answers, begin to start asking questions, begin to really start my own story. Like I said- many really good stories start with rock bottom, not a slow decline.
In 2014, newly married and was deathly ill. I ended up in the hospital because of multiple mystery symptoms including extreme fatigue, inability to stand for longer than it took to get to the bathroom, dramatic loss of strength and an episode that involved passing out and my lungs closing off. Eating made me want to gag even though I was hungry- malnourished, actually. I sometimes had blurry vision, lights and sounds seemed jarring, I was dehydrated despite drinking tons of water, constantly thirsty, had trouble controlling my temperatures (often feeling hot and cold at the same time and sweating or freezing without reasonable explanation) and I was scared out of my mind. I lacked the energy and strength to bathe and feed myself on a daily basis. I had always been healthy and had no idea why I was so sick. Neither did an entire team of doctors.
A week later I had lost 8 pounds and couldn’t get to the bathroom without holding someone’s hand, had to shower in a chair, and could barely hold up my head to wash my hair. I was told there was nothing wrong with me. As I pleaded for someone to listen, the attending doctor would inch for the door. At 38 years old, I was actually told I would “grow out of it’.
They treated me like they thought I was crazy… and I was crazy… crazy upset that no one would help me; that no one would listen to me or test me for anything outside ordering an EKG or a stress test. I was crazy upset because when I would have episodes where my limbs would draw up and my extremities started to tingle and my muscles would contract in on themselves and then I would lose consciousness and in extreme times, my ability to breathe. Nobody cared or even answered the emergency button that I pressed. I could have died as I waited 20 minutes for someone to see what I needed. I had no idea if I was going to die while I waited for the hospital staff to notice that I needed help. I called my husband and begged him to leave work and stay with me. I didn’t feel safe and didn’t want to be left alone.
Nobody on the staff of the hospital cared what I was experiencing. They just wanted to look at my mitro-valve prolaps which hadn’t changed since I was twelve. I had doctors ordering tests that never even visited my room or talked to me about what I was experiencing- they were not interested in putting the puzzle together or gathering information that may tell them where to test. They would look at a basic blood lab and say “Your tests say you are perfectly fine, Mrs. Anderson” (not my name, by the way). I most certainly was NOT perfectly fine. What I was experiencing was not going to be found on a basic blood lab or urinalysis. Most things aren’t on those types of tests. And nothing that would land you with these types of symptoms- but they wouldn’t know what those were, would they?
I was told that because I was already gluten free, the antibodies wouldn’t show up and denied an MRI because MS “didn’t act like this”. (The MS doctor disagreed later, see below). They were wrong on both accounts.
The next week, I had improved but was still very sick. I could barely walk or stand for more than a minute- barely long enough to get to the bathroom- but I could sit. That meant I could drive. I immediately drove to my doctor that I had been seeing since 2008, four hours away in little Jackson, Mississippi. She had gained my trust In 2008 when she diagnosed me and ended decades of struggles when she treated me for the severe adrenal insufficiency that I had been dealing with for 20 years. Needless to say, I knew she would listen and find it. She found it on the first blood draw. She confirmed one of my suspicions that I had gluten ataxia. The tests showed tons of gluten antibodies in my system even though I had been “gluten free” for 6 years! My antibodies were lit up like a Christmas Tree. I was reacting to several foods- and would soon be reacting to even more (unbeknownst to me) .
Although the previous team of doctors had denied me a test for MS, she agreed to get me in to see an MS specialist for testing. I just wanted to rule it out- because I was having related symptoms that a friend who suffered from MS also experienced. I didn’t want to be the statistic of someone who waited 8 years for a diagnosis- again.
By the time I got to that doctor, I couldn’t control my urine flow, was experiencing the “MS hug” (or was it my first bout of asthma? or my POTS? or muscle spasms around my lungs?) and had lost partial vision in one eye. My pupils didn’t react properly to light and I had wet myself one day in my kitchen. That doctor tested me twice for MS. I didn’t have it. My white lesions were in “normal levels”- (I have to be honest, I didn’t know there was “normal” levels of white spots in the brain”. Although I understand why she needed to test twice to make sure, I was lucky. Gluten ataxia overlaps with MS 10% of the time and can turn into MS. I was one of the lucky ones. I got diagnosed before that happened. Good thing I didn’t wait the 4 to 8 years it usually takes to get diagnosed with an Autoimmune Disease- at least not for thatIAI Disorder.
By 2016 I would be diagnosed with Endometriosis, Celiac Disease (finally), Gluten Ataxia, POTS/dysautonomia, Sub-clinical Sjogren’s and Rheumatoid Arthritis, and Hashimotos Disease and Chronic Active Epstein Barr Virus (CAEBV). This does not include 2 previous neurological disorders, Chronic Fatigue Syndrome (also a neurological disorder), with suspicions of- fibromyalgia, PCOS, Mast Cell and Multiple Chemical Sensitivity – a diagnosis of hyper-mobility syndrome, arthritis through my spine and hips, and a congenital connective tissue disorder. Two of these qualify as rare diseases. I had more letters and abbreviations than the most educated human on the planet. CD, GA, RA, PCOS, POTS, MCD, MCS, CFS, CAEBV- It was as if I had a million degrees in chronic illness. (I guess in a way, now that i have beat them- I do!)
My body was attacking my brain, skin, intestines, thyroid, joints, ovaries, central nervous system, peripheral nervous system and maybe more (?).
But this was not where my story ends. It is where my story begins.
In August of 2014, before my lab tests came back from the Mississippi doctor, I started searching for answers. And I ran across this quote- and it changed my life forever-
“Those who get chronic illness say it’s the worst thing that ever happened to them. But those that beat it say it’s the best thing that ever happened to them”. – unknown
Inspired by stories of others out there, taking their bodies back from “incurable” diseases and proving that healing is between you, god and your body- I decided right then and there which one I was going to be. I had no idea why it was going to be the best thing that ever happened to me- but I chose to believe that it was going to be. I immediately started looking for the blessings- What was the Universe trying to tell me? What was it trying to help me accomplish, learn? What were the opportunities here? And I quickly found them.. I spent the next year conquering my nutrition for my gluten ataxia. I spend the next conquering the nutrition and lifestyle to conquer my Dysautonomia/POTS. I spent the next conquering my hashimotos, and my chronic epstein barr virus. And while I was working on those, my body was healing the others, as well. I decided to help others do the same, and in doing so- my research led me to more than I ever imagined- things nobody was talking about and that nobody was addressing with their protocols. Things much deeper and bigger that I imagined when I began this research.
I started taking my body back in September of 2014. I started with a healing protocol- and in 2 weeks had improved energy and endurance. I could walk the dog and groom and feed myself some. I knew I was onto something. And I had no more problems with my ability to hold my urine.
A year later, I had reversed the nerve damage in my leg and eyes and would never again have to watch my weight again, despite having struggled with it for my entire adult life.
Two years later, I was ready to work part-time, started a blog for those with similar stories and go back to school to pursue my new passion- helping others take their bodies back.
Three years later, I went for my first run- which had become impossible because of the inflammation through my back and nerves, and my sensitivity to heat and barometric pressure. I had nails for the first time in my life and even my oral health had started to improve- no new cavities in 2 years- which I struggled with B.C. (before chronic Illness).
Four years later I was still seeing improvement in my vision and response to light and dark, circulation, breathing and inflammation. Each year I’ve gotten better and better health. My hair was long and thick again, and my digestion improved markedly and I no longer had chronic anxiety. My supplements were becoming less instead of more. I continue to improve- and I continue to look for ways to improve.
And I get to help others start the same journey- improved energy, less inflammation, reduced brain fog, less pain, they are also on their ways back- back to having their bodies and their lives be their own again. Click Here for Testimonials.
Thank you for reading this very personal story. If you are struggling and would like help to Take Your Body Back from Chronic Illness, Autoimmune, a related disorder such as depression, adrenal fatigue, POTs, anxiety, inflammation or just want to improve your health, please sign up for my newsletter below. Those who sign up for my newsletter will also receive a free gift worth over ($350) as my way of welcoming you to the community, as well as an invitation into my private facebook group (for my readers only). Your first gift will be my webinar How to Reverse Auotimmune and Neurological Disorders at no cost, delivered directly to your inbox to watch on your own time. If you are interested in a” one on one” health coaching package and would like a consultation to see if I can help with your puzzle, then please contact my office- I take one on one clients through MyCrazyJourney’s sister company, BringingSozo. To see our available programs and to apply for acceptance into one of our programs, Click Here. For list of resources I used in my journey and to develop my protocol, please visit my Additional Resources page.