My Story

Allow me to introduce myself..

Hi! I'm Shannon and I'm chronically ill. Every time I hear myself say that I can't help but associate it with some sort of 12 step program for addiction. In reality, my life for the past few years has not been  much different from that of a recovering hardcore addict. I have seen plenty of ups and downs. I've been through the 7 stages of grief as well as the 7 circles of hell. I've laughed, I've cried. I've wished for life and I've wished for death. I've felt like just giving up, and I've felt like there's nothing in the world that could keep me from fighting on.

I decided to write this blog for a few reasons. One- to document my progress as I stumble along blindly down an unknown road, hoping to one day look back on it all as a distant memory of another life. And two- to provide some comfort to those who are floating along in the same boat, and perhaps provide a little bit of guidance. Boy, I would have given my two front teeth to have had someone to guide me when the nightmare began.

So, without further adieu, here is my story. If you promise to try not to fall asleep while reading it, I'll promise to try not to fall asleep while writing it. Ok? Here goes....

In the beginning....God created Shannon

I wasn't always like this. In fact, if someone would have told 21 year old me that I was one day going to become a prisoner to my own couch, and that normal every day things like preparing a meal or driving a car would eventually become an epic feat, I would have told them to stick it where the sun doesn't shine. I was never a sickly kid. Never had emotional issues. Healthy kid.

I had a great childhood. I was raised from a very young age in sunny south Florida. As early as I can remember, I was athletic, outgoing, creative, smart. By the time I was in high school, I had already established a successful career in equestrian sports (yup, I was that kid with the pony!) and was excelling at the honors and gifted level classes. My future was bright. I was offered scholarships to some of the best school in the country  (both for my riding and for busting my butt in school). I was going places.

If there was one thing that people could say about me it was that I loved to live and I loved to laugh. Overall, I was very happy (aside from the "normal" adolescent drama). I lived life to its fullest. I traveled, had lots of great experiences, learned about everything and anything I could, and had TONS of fun. If anything, I lived too much! Funny, your parents never say to you as a kid "Now be careful! You can't live too much or you'll get sick!"

Just before I was struck down by the wrath of the plague, I was living the corporate dream working in advertising as a graphic designer. I had a nice place on the beach that I was very proud of, and a full social life. I had been working on building my own design business for a long time, and was finally starting to see some results from all the blood, sweat, and tears.

I'll admit, life wasn't always perfect. I worked long hours and often neglected to give myself important requirements for staying alive like sleep, nutritious meals, and "me"time. I was under quite a bit of stress, and had been running on fumes for longer than I'd like to admit. But lots of people do this and are just fine. Corporate America rule #1- Always give 110% !!

Enter the Apocalypse

I remember this day like it was yesterday. I refer to it as "the Apocalypse" because it was the end of my life as I knew it. It was a Thursday in December. I had had a particularly eventful day being subjected to every a**hole in the office and all their glory. The day was grueling, and I was ready to carve my wrists with a butter knife.  I decided to dip out an hour early to prevent myself from committing inter-office homicide and catch a spinning class at the gym before going home. Something was building inside of me that I just needed to release, and I figured that working up a good sweat was a better idea than stabbing the head of account services in the eye with a pencil.

I arrived at the class and chose my usual bike. I took a deep breath as the music started and began to pedal. It felt good to move. Now the music is getting faster and I'm pedaling harder. Faster...and faster. Something inside of me was screaming. Telling me to keep going. To pedal so hard that maybe I could break out of my own body and out of this adult life in had somehow gotten myself involved with. I vaguely remember the teacher coming over to me and telling me to take it easy, that I could hurt myself. But at that point I was in another place mentally. Maybe I wanted to hurt myself. Who knows.

Then I heard a pop. It was unlike anything else I had ever heard. It was like the "pop heard round the world" Something snapped inside my head. Now I wasn't the only one spinning. The whole world was spinning like Mister Toad's wild ride. I was desperate for air, but somehow a whole room full of oxygen was managing to evade my lungs. My heart was beating so fast that I thought it was going to make a grand exit from my rib cage right there and tap dance its way out. I had never in my life felt such a panic. All I knew was that I needed to get out of this public place and to the safety of my own home.

Somehow, I managed to actually start my car and begin to navigate my way home. It took me a while to figure out how to work this machine that I had previously been operating on autopilot all these years.
After sitting panic-stricken through 3 cycles of one red streetlight, I managed to find my mom's speed dial button on the phone. She answered, and her voice was the most angelic thing I had ever heard.

Hearing the distress in my voice, she pleaded with me to wait there and she would call for help. I probably should have listened, but there was no time for that. I had to get home, and she had to tell me how to get there, and how to operate this vehicle. After an hour and a half ( I lived 20 minutes from the gym) of evading oncoming cars, attempting to respond to traffic signals, and several u-turns I made it into the parking lot of my apartment building. With my mother on the phone and my front door within sight, I was on my way to safety.

She begged me to go to the hospital but I wanted nothing to do with it. All I needed was a shower, some food, and a good night sleep. Then I would be all better in the morning...right?

Somehow I managed to shower, make a sandwich (and actually eat it), and finally pass out from exhaustion. My alarm clock went off as usual the next morning, and I sat up in bed for a minute, almost believing that the horrific experience at the gym was just a terrible dream. Then I realized that I couldn't breathe.

The panic came on like a tsunami, engulfing me in its carnage. I was drowning in my own home. I fumbled with the phone and managed to get my mom again. This time she wasn't taking no for an answer and was at my front door within 15 minutes. Before I knew what was even happening I was in her passenger seat and on the way to the ER. I was blacking out, and could faintly hear her voice telling me to breathe and stay with her getting further away.

When I woke up, I was in a hospital bed with all sorts of monitors attached to me. Apparently, they had photographed and monitored my heart, and took a "full battery" of blood tests (later on I would find out how incompetent these tests really are). The doctor was very dismissive and told me that I was suffering from "exhaustion" and that I needed to get some rest and drink more water. And they sent me on my way.

The 7 circles of hell

From that day on, I lived in nearly 6 months of crippling anxiety that would eventually turn into agoraphobia. Repeated visits to my GP offered nothing more than a diagnosis of "Generalized Anxiety Disorder" and offers of SSRIs and anti depressants.

My body was rebelling against me and I had no idea how to stop the cascade of inner violence that had over taken every comfortable feeling I had known. I did not have one day of peace and after 6 months since the beginning of the Apocalypse, I quickly fell into a downward spiral of deteriorating health.

 I had withered away to a mere 125 pounds (I am 5'10" tall and normally a healthy 155 pounds) and my hair was falling out by the handfuls. I was unable to digest any solid foods and and I was unable to use the bathroom without an enema. I needed assistance to stand and get from the bed to the couch. My meals had to be prepared for me, and I needed 24 hour care. I could not bathe myself, and could barely form complete sentences. I lived in constant pain, and even breathing was almost impossible.
 During this time, I was in and out of the hospital every other week. Full teams of doctors were completely perplexed and had no idea why this once healthy girl was now slowly dying with no tangible evidence as to why.

The first night of salvation

One night at about 3am after a long day of trying to stay alive, I dragged myself to the bathroom to vomit, again. I knelt over the toilet to expel what little bile I had left in my stomach contents, but didn't even have enough left to do that. I collapsed to the floor, and decided that I wasn't getting up. The cool tile felt like ice against my frail and withered frame. I could feel my life slipping away from me. I laid there and waited for death to come and rescue me.

Now I had plenty of years of Catholic school under my belt, but I had never really been close with God. We had an understanding, but we weren't good friends. As I laid there saying goodbye to planet Earth, I decided to pray. I didn't pray for life. I prayed for salvation and forgiveness. I asked Jesus to please forgive me for anything wrong I had done in life, and to come and take me to Heaven. I didn't want to be in this sick body anymore. I made my peace and I was ready to go.

The best way I can explain what happened next is what I imagine Nirvana would feel like. Everything was very bright. In fact, despite that I was laying on cold tile, I suddenly felt very warm.  The suffering was gone. The pain that I had been living in for so long had disappeared. I felt love. I felt it all around me, surrounding me like my favorite blanket straight from the dryer. I loved. I was loved. I WAS love.
Then I heard a voice. It was calming to the inner core of my soul. It was neither man nor woman. It was divine. All it kept saying was "not yet" over and over. I didn't want to listen. I didn't want to go back to that prison. I fought long and hard to stay there on that bathroom floor, but finally I pulled myself together and managed to crawl back into bed.

3 hours later I was so dehydrated that Mom decided to bring me some water with a pinch of salt..kind of like all natural Gatorade without all the crap. Low and behold I started to come to life again. I explained this to my doctor and finally convinced him to order an aldosterone/renin test.

They found that my aldosterone levels were incredibly low, and that for some reason my body was not holding on to salt.  I received a diagnosis of Renal Salt Wasting Syndrome (RSWS) and Symptom of Inadequate Antidiuretic Hormones (SIAH). They still couldn't tell me WHY these things were happening, but at least they were on to something. The sent me on my way with a prescription for Florinef, told me to eat my own weight in salt (not literally but you get the picture) and made me swear I would stay hydrated. Easy enough. Silly, naive me.

Take this and call me in the morning
The next few months would put me on the world's most irritating merry-go-round that plays "the song that doesn't end" on a loop. A harsh reality that I quickly learned is that there is no such thing as taking a pill and being all better. It was a very sad lesson. I was put on a medical conveyor belt and sent from endocrinologists to neurologists to cardiologists to allergists to GPs and back again. The salt was doing me right, but the medication did horrible things to my body. See, I am exceptional (go me!). My body hates medicine and protests very violently to it. So here I am, seeing a million doctors and not one can figure out why my health is so bad and why I can't take medicine. I got so used to seeing the confusion on their faces that I actually began to take some sort of sick pride in it. Perhaps I was a new species of human not yet known to science. I always knew I was going places!

My brush with Divine intervention is what encouraged me to keep seeking answers. Finally, in August of 2012, I gave up on conventional medicine entirely and set out to seek alternative routes. This was after the last visit to a new endo at the Cleveland Clinic that resulted in him sitting with me for 5 minutes, telling me that he had never seen a case like me in his life, and suggesting psychotherapy. Oh yeah, and me standing at the front desk paying $300 for this appointment in change (mostly quarters and nickels). I did however get some satisfaction in watching the annoyed secretary count all the change. Take that Cleveland Clinic!

Shannon in the buff

Since conventional medicine had failed me, I sought out some answers in natural medicine. While I experienced many failures in this realm as well, it gave me a much better understanding as to why my body had decided to become a rebellious brat. The beginning consisted of lots of research and lots of money wasted on supplements that either did nothing to help or sent me on another roller coaster ride. 

I have been on so many insane protocols and diets that it would make your head spin. The alternative world can be just as devious as the conventional world. Many of these so called healers really have absolutely no idea of what they are doing. They rely on the sales of their snake oils and potions. But I will admit that I've become a master in the art of cherry picking, and I have come out with a few tidbits of very helpful information.

The most important thing that I have learned is that if you are chronically ill, conventional doctors will not offer you much help. They will deem you incurable and send you to the psych ward to deal with your issues. Why yes doctor, of course I'm depressed. You just told me that you have no idea why I'm sick, that there is no treatment but to manage symptoms, and that I have to live like this for the rest of my life. What do you expect? Want me to do some cartwheels and perhaps order a ticker tape parade to express my happiness??

At this point, I have gone the complete natural route. I have had to change my entire lifestyle, including full overhauls on my diet, living space, and hygiene/cosmetics. It has been a full on transformation, and not an easy one, but I've seen progress. I move at the pace of a snail, but nevertheless I progress. 

Survey Says!

In summary, I have Environmental Illness. Unfortunately, EI likes to throw a party and invite all of its commarades!

I've got a pretty spectacular dozier of "diseases". It seems that each doctor I see, conventional or natural, wants to put their own flag on the planet Shannon. So far, this is what they've come up with:

Diagnoses from Western Medical Perspective

Mast Cell Activation Disorder- mast cells are the generals in the immune system army. They throw hand grenades in the form of histamine at anything they feel is an invader. Unfortunately due to Multiple Chemical Sensitivity, mine remain in a constant pissed off and confused state. They are ticking time bombs on a hair trigger response. They are like Agent Orange vietnam vets, and in their schizophrenic visions of invisible enemies have decided to just nuke the whole place.

Dysautonomia (the dysfunctioning of the Autonomic Nervous System)

Renal Salt Wasting Syndrome (RSWS) - basically this means that my kidneys don't hold on to salt, therefore creating all kinds of fun issues like electrolyte imbalances, low blood pressure, and potassium overload.

Syndrome of Inadequate Antidiuretic Hormones (SIADH)- pretty self explanatory. I don't produce enough hormones like Aldosterone, that hold on to salt in the body. Therefore I pee out most of my sodium.

Orthostatic Hypotension- This is a problem with my blood pressure. Basically, when I stand up too quick, the blood rushes downwards like normal, but does not come back to my brain quick enough like normal people's does. This deprives my brain of oxygen and causes me to experience episodes similar to mini strokes. If I've been laying flat on my back for a long time and stand too quickly, I will sometimes fall down or faint.

Chronic Fatigue Syndrome- This is so much more than just "being very tired" The name itself just pisses me off. CFS is hell on Earth.

Irritable Bowel Syndrome- This has unfortunately become a common household name. My gut is all kinds of wrong, and I have plenty of unpleasant symptoms to prove it. 

Fibromyalgia- pain, pain, and more pain. And did I mention sporatic paralysis?

Human Papiloma Virus (HPV)- Supposedly 90% of the population has this. I was just lucky enough to get the strain that causes cervical dysplasia

Hypothyroidism- Thyroid decided to go on strike. Results are a broken thermostat, hair loss, dry skin, and a myriad of other miserable symptoms

Generalized Anxiety Disorder- The "all in your head" diagnosis. This one is worthy of the trash can, along with the doctor who gave it to me.

Clinical Depression- I'm sick and no one can tell me why. Depressed? Me? No way! I'm happy as a clam!



Diagnoses from Alternative Medicine Perspective

Adrenal Exhaustion- My adrenal glands are working, they are just exhausted from the stress that my body has been under for all this time. It's believed that my insufficient aldosterone levels are a product of this disorder. Sadly, it is not a disorder that is recognized by conventional medicine. It really should be!

Chronic Candidasis-  The "Aliens have taken over my body" diagnosis. Another one worthy of the trash can, but I thought I'd include it since it is truly the "en vogue" diagnosis of the alternative medicine community.

Intestinal Dysbosis- Imbalance of "good" bacteria in the belly, allowing pathogens to rule the roost.

Leaky Gut Syndrome- Basically my small intestines looks like swiss cheese. This is a result of some of the above conditions going on for a long time unnoticed. It allows food particles to escape into the blood stream, causing an over active immune response. Doesn't help with my thousands of food  intolerances. 

Multiple Chemical Sensitivity (MCS)- pretty self explanatory. Allergic to everything.

Sympathetic Dominance- The "Type A" syndrome. My perfectionism has bitten me in the a** and caused an overactive sympathetic nervous system. The Sympathetic nervous system is the branch responsible for dealing with stress and the "fight or flight" response. I spent 9 months stuck in fight or flight. it was like trying to drive a car with the accelerator stuck at pedal to the metal. Not fun.

Estrogen Dominance- My progesterone levels are basically non-existent. My estrogen is very low too, but there is still more of it therefore I'm estrogen dominant. Being told that you're hitting menopause before you're 30 isn't what anyone wants to hear.

HPA Axis dysregulation- Something is broken in the feedback loop of my hypothalamus, pituitary, and adrenal gland axis.

Sluggish Liver/Poor Eliminator- I don't detox well. My liver is slow to react, and toxins build up in my body quite easily

Heavy Metal Toxicity- If you live in the world today, you have this to some degree. 

*All of my diagnoses have been proven based on various tests. I have not self diagnosed myself with any of these conditions.*

To read about my weird array of symptoms, look here

UPDATE - JULY 2013

Just when I thought I'd already seen hell...

Let me just say that the absolute worst experience on the planet is anaphylactic shock. Since I initially published my story, my health took another turn for the worst. There were a few months that I was feeling pretty functional, but as per the dietary instruction of another "practitioner" I cut my carbs way low again and began overdosing myself with salicylates in the forms of coconut, macadamia nuts, olive oil, and various herbs and spices. I just didn't understand...I was eating "healthy", yet my allergies were getting worse and I was beginning to feel like I was sliding back downhill very quickly. I soon discovered in a very undesirable and scary way that my bucket was about to explode. 

In April of 2013 I began to suspect that I had a major histamine intolerance so I quit all the slow cooked bone broths, paleo beef, and other histamine liberators. For the first time in months my migraines were finally gone and I thought "wow it's finally all coming together!" But there was still a missing piece to the puzzle because I was still feeling like total crap. I began to research foods and herbs with antihistamine properties, and I learned about Tumeric and how it was "wonderful" for combating allergic reactions. Yeah...right...

I prepared some chicken and generously seasoned it with the tumeric. About 20 minutes after consumption, my arms began to itch like there were a million fire ants biting me. My face swelled and my throat began to close up. My body went frigid and I felt a fear like nothing I had ever felt in my life..not even when my adrenals were failing. As I lay there struggling to breathe, I gathered every bit of mental energy I had to just get through it and I did (barely). I probably should have gone to the hospital, but I decided to ask God for help instead and it worked out. The experience left me weak and shaken, but the ride was far from over. 

After the tumeric incident my body was at full out war with anything and everything that it came in contact with. There was not one food that I could eat without my airways constricting, not even water. My sense of smell was keener than ever, detecting even the faintest smell of fabric softener from the neighbors dryer which in turn would send me into full neurological meltdown. I couldn't use toothpaste or any personal care products, even the all natural free and clear stuff. I played musical beds every other night because I had suddenly become allergic to every mattress and sleeping bag in the house. I couldn't watch TV or use my cell phone or computer without my body trembling. Leaving the house was out of the question. I thought taking Benedryl might help me, but it turns out I am also allergic to that. Yup, leave it to me to be allergic to the stuff they give to people who are allergic to everything. I was starving, scared, and praying for it all to end one way or another. 

After 2 weeks like this my mother desperately tried to consult with my GP again. He was completely clueless and told me to go to the allergist. Went to the allergist..he diagnosed me with anorexia nervosa and prescribed a liquid food called Tolerex, which is what they give though feeding tubes to people in comas. I desperately begged him to test me for Mastocytosis, but since my prick tests were all normal and I had no outward cutaneous (skin) symptoms, he pish posed the idea of Mast Cell Activation Disorder, which was clearly at hand here. Finally got that verified later on. 

 At this point I had truly hit rock bottom and knew that something was going to have to give. Upon returning home, mom and I agreed that I was going to have to force myself to eat something, no matter how unpleasant the reactions were going to be. She brought me home some rice cereal for babies and I survived on 6 tablespoons a day of this for another 2 weeks. 

I was quickly losing strength, weight, and hope. I had dwindled back down to 125 pounds again and spent my days laying in one spot focusing on hanging on to the little thread of fight I had left in me. Out of desperation I decided to go on a water fast. I knew that it was risky, but I felt that I didn't have much left to lose. I figured that if I could just calm things down and reset my body a bit, I may be able to get back to a manageable level. I said my prayers and embarked on one of the most brutal endeavors of my life to this day. 

I literally did not leave my bed for a week. I sat in total silence and tried to will myself into a coma. I prayed day and night. Finally after 3 days I got a little burst of energy and decided to check my email. This is when I stumbled upon the Failsafe diet. I read all about the "super responders" and the light went on in my head. I couldn't believe there were others out there that seemed to be experiencing the exact same things. So after 5 days of water fasting I broke my fast with some celery juice. I also purchased a carbon filter mask to wear so that I could go outdoors again. 

Today I manage my symptoms with the Failsafe diet and with being very careful about exposing myself to chemicals. It took me over 6 weeks for my body to calm down to the point that it would accept food again. I am still working hard to heal, but I can now go outdoors without my mask, and even in SOME public places. 

To sum it all up..

I hope you have gotten something out of reading my story (and that you are still awake). 

For some reason, I was chosen to be "exceptional". I stopped asking "why me?" a long time ago and I deal with it. I know in my heart that one day I will be healthy again. It's been a long, uncomfortable road, but I have seen improvements and I have learned to somehow find humor in all of my misfortune.

I never forget what it felt like to be well, and I hold on to that feeling in hopes that it will someday return to me. Most of the time I have no idea what I'm doing. I'm stumbling along an unknown path just like many of you who are reading this. 

I'm not looking for pity here. Just looking to give some hope to others out there who feel there is no way out, and perhaps put the occasional smile on their faces :) Thanks for reading.

~Shannon