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​​This isn't a story that I like to think about, but I'm going to tell it because I want you to know how deeply I understand what you're going through. ​








​To keep it from being a novel, I'm only sharing things that have to do with, or contributed to my illness. ​



​SO HERE WE GO.
PART ONE
​The Years Leading Up to Getting Sick


​

My happiest moments were spent at my grandmother's house. It was a 12 minute walk through backcountry and I would make my way there every day. My grandma would always greet me with hugs and lemonade. We would paint together beneath giant oak trees, sew gifts for my mom, watch TV beneath the stars on her porch swing; and most importantly, she would listen to me describe my inner world and nurture my heart and imagination. To this day, she is the most beautiful person I have ever met, and the moments I shared with her have everything to do with the person I am today.

My dad had to travel a lot for work, so it was just me, my mom and older brother most of the time. Both my mom and brother seemed to take all of their anger and frustrations out on me. My mom's manifested in twisted ways that I spent my teens unraveling in therapy and my brother had straight forward older sibling antagonism gone to violent extremes. I spent a lot of time hiding, daydreaming, and trying not to upset them, all the while longing for their love and companionship.

I was daydreamy and exceptionally bright when I was young, having a 4th year college reading level and doing algebra by the time I was 8 years old. Each year my teachers would recommend that I be moved up a class or two, but my parents weren't comfortable with the idea. While life at home was hard, friends always came easy and my disposition was bright eyed and full of dreams. 


Health wise, the only things of note from early childhood are that I got strep a lot, a bad head injury once, and got what was believed to be a Brown Recluse bite one Summer, leaving me with flu-like symptoms, a purple oozing hole in my leg, and achey joints for weeks. My mom didn't take me to the doctor and 20 years later, Lyme specialists would attribute this bite to all of my health problems.

By the end of primary school I had developed ADD as well as an eating disorder. While it had begun as coping mechanism for over controlling parents, the eating disorder eventually had complete control over me. I was hospitalized a few times for it and went to a boarding school in California for recovery. It was in this time that I began to to see a wonderful psychologist. Working with her enabled me to recognize my gifts, exposing me to new ideas like philosophy, quantum physics, and the fact that I was an intuitive empath. I saw her twice a week until I moved away for college. While the eating disorder and ADD remained a struggle into my adult life, my relationship with her undoubtably saved me.

I moved to Los Angeles when I turned 18 and ended up with Mono a few weeks later, despite having kissed absolutely no one.. Afterward, I continued to feel sluggish and foggy. While the eating disorder had lessened its grip simply by moving out of my parent's house, I had gained 30 lbs in less than a year, had episodes of extreme inexplicable vomiting, and struggled with chronic UTI's, yeast infections, allergic reactions and eczema. At one of my ER visits for a kidney infection the doctor told me that I had the white blood cell count of someone with AIDS, but she had no idea why. She recommended I seek out a naturopathic doctor.

​I was 19 and had no idea what a Naturopath was, but my neighbor referred me to one in Santa Monica who diagnosed me with Candida, a popular diagnosis at that time. I could barely afford the first appointment, so I obsessively researched the condition and was introduced to the wonderful world of organic food and holistic health. I did an extreme cleanse, took lots of supplements, and began eating what is now known as a paleo diet. After two months of unwavering commitment, I had lost all the weight and began to feel amazing. 

I had started the diet to heal from the chronic infections, but it also helped with my focus and food cravings. It seemed to be the answer to everything and I felt more alive than I had since childhood.

​This lasted about two years.


​
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At Urth Cafe on Melrose. I had become a huge convert to organic eating and a paleo type diet after healing from a mini health crisis. I would continue to eat different versions of that diet for 11 years.
PART TWO
​Then Some Strange Little Things Started To Happen

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When I was 21 I booked a lead role in a new television show that filmed in Manhattan. While filming the first few episodes, I fell in love with the city and decided to apply to New York University. Since recovering from my mini-health crisis years prior, I had gone on Adderall and was able to do exceptionally well in community college while acting in commercials. The show got cancelled, but I was accepted to both NYU and Berkley and decided to enroll at NYU for winter semester.

​About two weeks before I moved was when I had my first seizure. It might sound really odd, but I didn't think much of it at the time. I had healed so much through diet that I just thought I needed to eat a little healthier and all would be fine.


On the plane from LA to NYC with my two kittens (Clementine and Coquette) that I had fallen in love with and adopted, I was sitting in my seat and began to get an intense pain in my kidney area. Dizzily, I walked to the bathroom to collect myself and just started crying. I also remember being nauseous when I arrived for the first week or so because of the pollution in the air, but that had happened when I first moved to LA too and I knew I'd adjust.

Upon landing at JFK, I took a cab to the city to drop off the kittens, then took the train to Redhook to buy a mattress at IKEA and hired some guys to drive it back for me. Then I went to have my student ID photo taken and walked around Soho looking for a winter coat. It was five degrees that day and I had never felt anything like it. But this was typical of me. Running on adrenaline, fearless, and always productive.

​I started classes the very next day.

In those first weeks I began to develop some visual disturbances, mostly big glowing halos around lights. It was strange and they made it hard to see, but I remember being amused by it, thinking it was pretty. I went to the campus optometrist to see if I needed glasses. He said my vision was fine but that I should see their Neurologist. I was busy with my new life in the city and the visual disturbances happened less often, so I never followed-up. Around the same time I also began to have trouble breathing, was diagnosed with asthma and written a prescription for an inhaler and inhalable steroids. I filled them but never took them, and those symptoms lessened with time too.

The first thing that definitely seemed outside the realm of normality happened on the first sunny day of the year. It was beautiful out, and after a long winter I decided to walk home from my 10 am class. Somewhere along my way I got really disoriented and confused. Not able to understand who or where I was, let alone ask for help. I vaguely remember wandering through China town, then blank, then sitting on a park bench terrified, then blank. It should have been a half hour walk home, but I didn't get back to my apartment until it was almost dark.

​This wasn't like me, I was always on top of things, sharp, capable. 


Around this time I also began to faint occasionally, often upon standing. When I would go for my annual physical I would show extremely low blood pressure and body temperature. Doctor's would attribute it all to being thin and didn't seem worried, and honestly, neither was I. 

​Despite the little oddities, I still felt perfectly healthy and vividly alive. I felt deeply connected to the world around me, often feeling in awe of the smallest things. I was endlessly inspired by the city and excited about all of the wonderful possibilities my future held. ​

​
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Out with girlfriends in college at Cipriani's in Soho. Dancing and carefree
​






PART THREE

Then something downright traumatic happened

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One night I came home and decided to head to the gym on the rooftop of my building for a jog on the treadmill and stretch beneath the night sky. It was a hot summer night and I was listening to Coldplay and soaking in the evening's stillness. I went back down to my apartment and made a chicken salad and had some yogurt before heading off to bed.

Sometime around 3 in the morning I woke up blind. I had had many out of body dreams in my life and thought I was dreaming at first. I started reaching around me, grabbing my sheets and touching my face and realized that I was awake. I felt around me for my phone and found it, but couldn't see it to make a call. Thank god for blackberries back then. I felt on the keypad for the call button, hoping to redial the last person I'd called and got my dad's voicemail. I began to panic. He was usually overseas and I rarely heard back from him before a week's time passed. 

I remember being thirsty and instinctually knowing I needed to eat. Since I'd moved, when I felt disorientated or my vision got blurry, an apple would quickly remedy it.

I went to feel my way to the kitchen and hit the floor upon standing. I couldn't stand. I started dragging myself with my hands to the kitchen and began to shake and seize and pass out on the floor. When I woke up, I was still blind and even further gone. Afraid I wouldn't reach the refrigerator in time, I pulled myself up to the kitchen sink and began lapping the soapy water that I had left the dishes to soak in into my mouth. I seized again and passed out. The rest of the night is a blur of me trying to get to the refrigerator and crashing down on the hard floor again and again.

Clementine and Coquette nestling their faces into me brought me back into the room for a a couple of seconds, and in those seconds I realized I was dying. I saw my body laying on the floor in my kitchen with a green apple in my hand. I saw the girls pacing over me trying to wake me up. I so badly wanted to, but I couldn't get back in my body. I couldn't move. At the very moment I decided to give up, to let go, Clementine rammed her face into mine with a loud cry.

Suddenly, my only thought was how heartbroken and confused they'd be if I died. I felt a rush of heat and adrenaline as my consciousness slammed back into my body. The first thing I felt, was the cold apple in my hand. I brought it to my mouth and took a bite and passed out again. 

The next thing I remember is waking up in an ambulance. All the way in Japan, my dad had gotten my voicemail and called for help. The paramedics had found me lifeless on the floor and given me a glucose injection. As they wheeled me into the hospital, they told the doctor about the injection. She pricked my finger to test my blood sugar and ordered some labs. Since my glucose was still very low, they put me on a drip.


After a couple of hours I was feeling remarkably good. The doctor came in to tell me that I did not have diabetes, but that they'd like to admit me to the hospital for anorexia. I insisted that I had eaten the night before, and in fact, had been eating more than ever since moving to New York. I still remember her response, "to have blood sugar that low you have to not have eaten for at least a week." We went back and fourth for a few minutes but I finally gave up trying to convince her.

I was getting anxious because I had a French mid-term in a couple of hours (I took classes throughout Summer so that I could graduate early) so I walked out of the hospital and went home to change for class.

From that day on I always carried snacks on me and slept with apples and orange juice next to my bed. I knew what the beginning of low blood sugar felt like and would eat before I was too confused to know what to do. As I finished college, I had a few other strange episodes involving loss of my sense of body in space, fainting, and severe dehydration with vomiting. But those days were few and far between, and as long as I ate every four hours, I felt perfectly fine.


​








​PART FOUR
The inciting incident




​In my last semester at NYU I was offered a lead role in a new reality TV show about the New York art scene. I signed the contract, but had no idea if and when it would get picked up by a network. Just after graduation, I was offered a job as the office manager at a global tech and finance company. I had been wanting to move back to Los Angeles, but decided to take the job until the TV show either got picked up or the hold period on my contract had lapsed.
​
My new job was extremely demanding and I worked insane hours, but it also turned out to be way more rewarding and creative than I had initially expected, as I was quickly promoted to head up all in-house and outsourced creative aspects of the company. Our New York office was rapidly growing, and I worked with one of the CEOs to secure the lease on a 12,000 square foot loft overlooking Union Square Park. On top of my other job responsibilities, I was to be the lead on hiring and collaborating with the architects, contractors, and interior designers to build out, design and brand the entire new office. 
​
​

In the span of about 6 weeks, 3 things happened:

1.  Our entire New York office moved into the new space, while it was still under construction.

2.  Just as my contract was about to lapse, the reality show that had been developed around me got picked up and began filming.

3.  My roommate left candles burning in his bookshelf before work, setting our Williamsburg condo on fire.
​

This would mark the beginning of a five year nightmare.



​





PART FIVE
​​
How to get MCS, Fibromyaglia and Chronic Fatigue in a month
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​The floors in the new office were being refinished the week before we moved in. I'd requested a no VOC water-based finish because my boss had asthma and water based finishes looked way better anyways. I kept stopping by the new office to check them out, but the elevator was locked to our floor. When I was finally allowed to access the space, it was clear that they had used a polyurethane finish. I could tell because it had an awful sticky orange look to it. I remember some people being bothered by the fumes that first week, lots of coughing, but they just smelled like new construction to me.


Two weeks later I started getting splitting headaches, nausea, and puffy glazed over eyes whenever I was at work. I'd step out and feel better, go back in and feel really bad. It didn't take long for me to realize it was the floors, but figured they'd finish off-gassing soon.

After a month in the new space, my back, neck, arms and wrists were hot and swollen. Sharp pains would run down my legs and up my wrists when I moved. My legs began to cramp and ache and I had to stretch them constantly to keep them from twisting up. My limbs would go numb and harden at night, and in the morning it would take 15 minutes of stretching in bed to loosen them and gain back feeling. 


When we had first found this huge perfect open loft with 3 walls of floor to ceiling windows overlooking the park, I pirouetted and leapt across it, excited to work somewhere so beautiful, but I was in a completely different body now.


I made work my priority, working through the weekends and into the night. My goal was to get the architects and contractors hired as soon as possible, then get back to yoga, book some massages, and do another cleanse. I was sure that would do the trick. In the meantime, I drank a lot of coffee to get me through the days.

One night, one of my closest girlfriends was having her first gallery opening in Brooklyn, and even though all I wanted was to go home and sleep, I went because I knew it would mean the world to her. Afterward, her, her husband and I walked across the street for dinner with a lovely and handsome man they had been wanting to introduce me to. Just as we had all ordered, I got a call from my housemate that our condo had caught fire sometime that morning.


Clementine and Coquette were all I could think of. As he rambled on about the damage, I kept asking if they were okay. He swore that they were fine, but of course I rushed home to them.

My roommate had left candles burning in his bookshelf while meditating in the morning. His room upstairs was burned badly, and everything was covered in a layer of soot. The couch, the floors, the walls, and the girls. The firefighters had arrived in the afternoon and the neighbor had told them I had two cats. I would later learn that the girls had suffered permanent lung damage in the fire. 

Coughing through the smoke, I gathered some things from my bathroom (the only place untouched by the fire) and took a cab to a friend's house nearby because he had a guest room. His dog barked and growled at the door all night, so I checked into a nice hotel in midtown the next day. Apart from once when Clementine was sick, this was the first day I had ever taken off work. I slept the entire day.

The insurance company sent a fire clean-up crew to work on the house and I was told I could return home in a week, but they weren't going to cover my hotel or any damage to my belongings. Not knowing what else to do, I went back to work the following afternoon. It happened to be a Friday and my 26th birthday.

I was greeted by everyone with genuine concern, offering to help in any way they could. A few even offered their couches up to me. The tricky part was that most people in Manhattan barely have room in their apartments for themselves, let alone a friend and two cats, and my two closest friends were all allergic. As I made my way to my desk I realized that it was covered in flowers, so many that it was comical, and there were cupcakes too! It filled my heart up. I sat down and on my keyboard, there was a huge check from HR "to help you get that wardrobe back," it read. I smiled to myself and sat down to work, feeling like everything would work itself out.

After work I went back to the hotel and napped with the girls. To make things easy, my best friend offered to come get a bite with me at the hotel restaurant. Two days of sleep and an entire day and a half out of the office had me feeling quite a bit better, so somehow I agreed to an impromptu birthday party that night.

A few weeks later, now back at my fire-damaged apartment, the TV show I was contracted with got picked up by a huge network... probably the hugest network. Half of me was hoping that since I no longer worked in art, they'd release me from my contract, but the production company set up a job for me at a gallery in Soho instead. ​

Whenever I started to get overwhelmed or wonder how I could possibly manage everything that was happening in my life, I'd take a deep breath and say to myself, You can do it all. You've come so far. You can have everything you want. That had been my lifelong mantra.

And this is what I was doing at the time:

1.  My normal job, plus construction and design of the new office, and training the new office manager, because up until the move, I was still managing to manage the office.

2. My fake job, running out of the office to film when they needed me, and filming into the night.

3. Living in an apartment with no gas or hot water and construction that would begin at 7am. I found a 24-hour Korean spa near my office where I'd go for massages and to shower after work while my roommate took cold showers at home.









PART SIX

I don't recognize myself anymore



​Long after everyone else could no longer smell the floors, walking into the office was like walking into a thick fog of poison to me. The headaches and pain that were first confined to when I was in office were constant now. I was always nauseous, sometimes running to the bathroom to throw up mid-meeting, and I couldn't think straight. What used to take me an hour to do would take an entire day. I ordered an air purifier and put it on my desk, opened my window in the dead of Winter, anything I could to get through the day.


My home was also still a mess from the fire and my roommate (who owned the condo) didn't want to pay to get the heat and hot water back up, so I finally broke my lease and moved to a beautiful condo in Prospect Heights. I started working from home on days I didn't have meetings and managed to get by for a few more months by taking nightly epsom salt baths and sleeping straight through the weekends.

What had happened to me? I used to be so alive. I used to walk home from work taking in the seasons, the trees, meeting friends for dinner, drinking lavender cocktails into the night, in awe of how connected I felt to everyone and everything. Now I just wanted to escape my body. I was never present. If I let myself be present, I'd go insane from the pain.


By this time I was sleeping in full arm braces because the slightest movement would compress on my nerves. My legs hurt so badly that I'd wake up gasping for air. I can still remember being in tears trying to wash my hair or pour a glass of water. One night, I got so frustrated trying to make my bed that I started slamming my arm braces into my face. My nose started to bleed and I just sat on the floor, covered in blood, sobbing. It was the first time I had cried. The next morning my face was swollen and bruised, but it was nothing compared to what I felt in the rest of my body.

When I got to work the next morning, it was finally advised that I take medical leave.




​Chapter 7
She's Not On Drugs



​When my two weeks was up, I was definitely feeling better just from not being around the floor fumes, plus I figured they'd had time to off-gas even further. So I decided to return to work while continuing physical therapy for my wrists, which had been helping some.
​
​My first Monday back, I ate breakfast and decided to walk up to Target before work to get some paper towels and laundry detergent for the house. The next thing I remember is standing in the cosmetics aisle, holding a lotion I didn't remember picking up and not knowing how I had gotten there. Then it happened again except I was standing in the office supplies. Just then my phone rang. It was my assistant and I told her I needed help, that it might be my blood sugar. She told me to stay put and that she'd come find me.

I decided to go get a candy bar and eat it, but all at once I smelled poison all around me. My eyes darted around as I tried to figure out where it was coming from but all I saw were people staring at me. I asked a woman if she smelled something, if someone was painting, but she just looked at me like I was crazy. I thought, maybe I am going crazy. Frantic, I tried to find the exit but was completely confused. I blacked out again.

I woke up laying in the back seat of a man's car. I was scared and asked him to let me out. He told me he was taking me home and when I stepped outside, I was standing in front of my apartment. I was shaking and my brain was completely locked, unable to know how or who to call for help. 

I'm really not sure how much time passed but my assistant showed up and called 911. The ambulance took me to a nearby ER and I remember the paramedics saying to someone that I was having an anxiety attack. There were cops next to me with a handcuffed man. My assistant kept asking nurses for food and water but they said I couldn't have any, or that they'd get some, except they never did. I sat confused in my chair, wondering if I was dying again.

At some point my best friend showed up. I looked at him and saw the eyes of someone who clearly loved me. I barred down and focused, trying to remember who he was. I would be able to remember for a few seconds before it would slip away. I was terrified I'd forget everyone I loved. He brought me a granola bar from the vending machine, but I was so dehydrated it just crumbled down my face as I tried to chew it. I think it was around then that I began to vomit, I heard him yelling for a doctor, and I passed out on the floor of that dirty hospital.

When I woke back up I was in an MRI machine. After that I was taken back to my room where my assistant and best friend were waiting. Apparently there had been quite the argument between them and the doctors about whether or not I was on drugs, and the toxicology report had just come back clear, so they were feeling triumphant. They told me the doctor couldn't believe how much IV fluids my body sucked up so quickly. The nurse hung another bag in the ringer for me. I was completely coherent by the time the doctor came back and I explained what had happened in Target to him. He said it sounded like a seizure, that sometimes people experience "auras" with strange smells right before seizures. He had me admitted to the hospital. 


The next morning I woke up to my best friend working in the chair next to my bed. I insisted that I was fine and that he should go to work. I waited around all day, bored, interns and doctors stopping by briefly here and there to ask questions and order labs. My assistant fed the girls that first day and the next day I called another girlfriend to ask the favor. She hesitantly agreed, so when she came to pick up the keys from me, I had decided to sign myself out against medical advise. One of the doctors came running out to the desk when he saw me leaving and made me promise to follow-up with some recommended specialists on an out-patient basis. I agreed.

First I made an appointment with an endocrinologist to try and get to the bottom of the hypoglycemia. She tested for Diabetes and Hypothyroidism and both came back negative. She said the next step would be a supervised fast in a hospital where I'd have labs drawn throughout the day, since I couldn't fast on my own without having seizures. She prescribed me some blood sugar regulators, anti-seizure meds, pain relievers and anti-inflammatories and called her affiliated hospital to get me in for the test.

Unfortunately in New York (at least back then), the waiting time for anything outpatient that wasn't an immediate emergency was months. Even more unfortunate, and what would today be illegal thanks to the Affordable Care Act, my insurance company sent me a letter to inform me that my policy was being retroactively dropped because I had failed to disclose hypoglycemia as a pre-existing condition. My medical bills were coming up to around 200,000 dollars. 

Since I no longer had an insurance policy in New York and wasn't getting anywhere on the wait list for the blood sugar testing, I decided to fly out to LA to see my old general practitioner, exceptional smart and caring, we had become friendly over the years. Empathically, she listened to what had been going on since she'd last seen me for an hour and got on the phone with the best endocrinologist and rheumatologist she knew.
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Staying at a beach front hotel in Malibu while in LA for tests. Sleeping so much my friend put tangerines in my hair



​The rheumatologist called me that evening at 10pm, we spoke for 5 minutes and she asked me to come by her office the next day even though it was her day off. She was eccentric, sharp, and thought outside the box. She spent 2 hours with me, and rather than ever doubting my symptoms, she seemed fascinated by my case. She examined my skin, nail beds, and how I walked and concluded that I had a genetic form of hyper-mobility that "sometimes caused problems, but I'd need to see a specialist about." She also said it sounded like I had a "junk diagnosis" called Fibromyalgia along with Chronic Fatigue. Since I didn't have insurance, we didn't do labs and she only charged me what my co-pay would have been. 

The next day my GP got me into the head of endocrinology at Cedar Sinai at his office. Since I couldn't afford a hospitalized fast, his nurse set me up in one of their exam rooms where I hung out all day having my blood sugar tested. I experienced no symptoms the entire time other than some lightheadedness. He told me that sometimes people could have tumors on their pancreas that would cause diabetes like symptoms, but there was no way to know without imagining. I left straight to the airport and on the plane ride home, passed out a few times. 

When I got back to New York I continued to work from home. One day when walking to the grocery store I got a call from the executive producer of the TV show (who I had become good friends with) that, even though the show had been developed around me and I was the highest paid cast member, he felt it was best to recast me. 

​Since my contract with the network was what was keeping me in Manhattan in the first place, with a deep sense of relief, I decided to move myself and the kitties back to LA after Christmas.


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​Chapter 8
​
A Home in Los Angeles



​I still didn't know what MCS was, but I had to view at least 20 apartments and houses in LA because I would walk in feeling my normal baseline sick, and quickly get dizzy, nauseous, intense headaches, convulsions, and extremely disassociated, often even blacking out.


On my third day of looking I found a 1920's Spanish duplex in Hancock Park, which had always been my favorite neighborhood in LA, but near impossible to find a vacancy in. It was beautiful. The owner and his wife lived upstairs and were the kindest people, and it was the first place I looked at that I felt absolutely amazing being in (I later found out that the landlord had mild chemical sensitivities and had used no VOC paints and floor finishes).

The only problem was that it was 4 bedrooms 3 baths and too expensive for me to manage alone. I signed the lease and made a plan:  Find a roommate, go see some doctors, get better in a month or two, get an amazing new job, and start a new life for the girls and I in LA.

I posted on Facebook for a roommate and one of my friends recommended a young man that he played basketball with. He came by the big old house that night and I instantly felt more at home. We were the same age, he was happy not to use chemical laundry or cleaning products, and he moved in later that week. I went about my meetings with specialists and physical therapy for months, and in time, my lovely roommate had gotten a diamond and we were meeting with a ring designer. 

While I was still very sick, I had always had an innate tendency for optimism and falling in love only made everything seem more possible. I was taking anti-seizure meds, blood sugar meds, and anti-imflammatories that my Rheumatologist had prescribed me, but would still faint and have seizures fairly often. I also began to recognize that doing much of anything - even an easy yoga class - would make all of my symptoms flare. We couldn't go out much, and often if we did, I'd have a hard time standing for long or have a reaction to someone's perfume and we'd have to go home. If I optimistically forced myself to go to a friend's birthday party or event, I'd "pay" for it for days.
​​





​My dad decided to throw us an engagement party at the Ritz Carlton in Tokyo a month later. I was extremely nervous about traveling, but decided everything would work itself out and I'd take extra traveling precautions. The night before we were supposed to leave, I could see that that there was no way I was well enough to make it through a 12 hour flight alive, and even if I did, I'd be too sick to interact with guests. With a defeated heart, I called my dad to cancel the trip the night before.

There was a lot of strain on my relationship surrounding my health and I think that he often wondered if I was exaggerating things. This was all made worse when I got a UTI one day and developed Interstitial Cystitis from the antibioitics perscribed for it. Although the infection had been cleared, the pain never went away. I remember being awake all night, pacing around the house in pain, having to urinate 15 plus times a night with tears in my eyes. I saw many doctors to no avail, but it did calm down (a bit) after that first horrific month.

A couple of months later he began to spend a lot of time with a new female co-worker. Since I was rarely able to leave the house and he liked to be out and about like a normal 29 year old, I tried to be supportive of him spending time with friends, but it wasn't long before he began a physical relationship with her. I ended things at that time, but because I was so sick, he continued to live there and look after me when he was home.

With all the medications I was on, and all the specialists I had seen, I felt little to no improvement. Without insurance, the medications were also incredible expensive. I made an appointment with my Rheumatologist and told her that I'd decided to stop taking everything. Rather than debating my position, she told me about a medical article from Spain she'd recently read that talked about Glutathione IV's to treat chronic conditions and that she thought I should see an Environmental Toxicologist. 



Let's recap the symptoms here. 

At this time I'm still fainting and having seizures, have a feeling at all times of day and night that I've been poisoned - a heavy, puffy eyed, toxic, drugged feeling, have all sorts of visual disturbances like temporary blindness, loss of periphreal vision, extremely low blood pressure, blurred vision and floaters. I was still intensely hypoglycemic, setting my alarm to eat in the middle of the night, have MCS (even though I don't know what it is) with an array of immnological and neurological reactions. I am limited in the places I can go and friends I can see, have officially been diagnosed with Fibromyalgia and Chronic Fatigue Syndrome with intense muscular pain, inflammation, and fatigue, am peeing a minimum of 6 times a night with a pain that varies from annoying to excrutiating, I also had chronic constipation, carpal tunnel, tendonitis, a whiplash injury that never seemed to heal, nerve twitches and limb spasms that lasted days at a time, a sore throat every second of every day, food allergies, strange random rashes, tinnitus that came and went, asthma, mold sensitivity, Raynaud's, always freezing cold, and more often than not feel what I can only describe as poisoned.

I'm seeing general practitioners, a Rheumatologist, and a Urogynocologist. I'm trying to do yoga but end up vomiting and writhing in pain all night from the exertion. I'm meditating daily and am on a perfect paleo diet.  And this is all before Obama Care, so I have no insurance.



(I've decided to describe the rest in less detail because I can't imagine anyone reading this far along)





Chapter 9

Functional Medicine, Metals, Lyme and Detox
After researching, I made an appointment with a Naturopathic doctor who worked with an Environmental Toxicologist in Los Angeles. The office was modern, white, and cold, but the doctor was one of the warmest and loveliest women I'd ever met. We discussed my case for an hour. I told her that my Rheumatologist had recommended I try IV glutathione. She was experienced in working with glutathione and ran genetic tests to determine my methylation and detox capabilities. We also decided to test for heavy metal poisoning.

My tests came back with toxic amounts of lead, mercury, and aluminum, lots of detox and methylation mutations, and an absent GSTM1 (which means my body genetically can't make glutation, the master antioxidant). This was the first time that I'd seen real and definitive answers to why my entire body seemed to be falling apart. Certain that I'd finally found gotten to the root of the problem, I couldn't wait to start addressing it and immediatly began IV chelation therapy and bi-weekly IV's of glutathione and other nutrients.

My new understanding of my illness, based on the healing paradigms of this clinic was this: I was genetically detox and methylation impaired; and because of this genetic insuficiency, I wasn't able to detox heavy metals and chemicals like 'normal" people. This explanation directly pointed to why I felt so sick around chemicals and if I ate non-organic foods. It also explained why exercise or yoga made me feel so sick, as both activities mobilized toxins that my body was unable to flush. 

This made perfect sense to me. Instead of suffering through the headaches and confusion and sore throats of my friend's perfumes and smoking, I began to politely ask them not to use it when they saw me. I also began to research what products had chemicals in them and switched all of my personal care products to organic ones. My home products were already largely safe because I only shopped at natural markets, but I upped the bar for purity on those too. Anything I could do to "lower my toxic burden" while I underwent medical detox. I belived this to be the "reset" that my body needed.

With all of the avoidance of chemicals and finally allowing my body time to just relax without guilt, I began to feel much better. The glutathione and other IV nutrients also seemed to help. I went to all my appointments with a sense or purpose because I finally knew what was wrong with me how to regain my health. I met others in the office who had gotten better and made lots of friends sitting in that IV room. The only problem was, that the chelation would leave me incapacitated, fevery, often vomitting for days when it seemed to help others. I went through maybe 8 sessions and took all my perscribed supplements religiously. While my intersitital cystitis seemed to impove, my extreme reactions to the chelation therapy concerned my doctor and she decided to test me for Lyme Disease using the CD57 marker.

I still remember the sound of her voice when she called to tell me I tested positive and that I needed to see a Lyme Specialist. If I remember correctly, my CD57 was 28 at the time. (In the entire duratino of my Lyme treatment, it would fluctuate in the low 30's). We stopped the IV chelation because I was told people with Lyme Disease can't address heavy metals until other things were treated first. In the meantime, I continued to see the her for IV nutrients because they seemed to help, and just being in her office made me happy. 

I remembered one of my friends in New York having to do a few weeks of antibiotics following a tick bite in the Hamptons, and initially thought my treatment would be similiar. I had had a terrible history with antibiotics - multiple allergic reactions with ER visits as a teenager as well as the onset of interstitial cystitis more recently, so I was hesitant to say the least. Then as I began to research I found an entire world of terror and heartache, stories that sounded all too familiar. Lyme was an intensely adaptable and intellegent organism that infected every system in the body. It had the ability to mutate and hide from antibiotics as well as lower the parts of the immune system meant to defend against it.

As I debated how best to move forward, I met two young men who had been in treatment with a doctor close to my house who they highly recommended. One of them was still in treatment with her and the other was cured. I still remember what the one who was completey healthy said to me: 


Him:   She's a great doctor - you should start there - but she didn't cure me. Meditate every day - even when you think it's stupid. And drink bone broth.

Me:   Wait, what cured you? 

Him:   I had to learn something. When I learned it. I wasn't sick anymore. 


I thought it sounded elusive and "new-agey" and was frustrated that he didn't tell me what he had learned! I didn't push him because I knew without asking that he wouldn't divulge. A huge part of me believed that he'd actually healed through all of the treatment, and that he wasn't seeing his own healing clearly. Though I haven't spoken to him since, I now know with completely certainty that he was right.

I took his advice and booked an appointment with the Lyme specialist that he recommended. Her wait list was long, it took about a month just to get an appointment. I'd always meditated, but I started doing it with a little more purpose.

​


​Chapter 10​
Bombing My Body With Antibiotics

​
​
Many people in the Lyme community - practitioners and patients alike - view Lyme and its co-infections as the causation of everything. They see things like chronic pain, seizures, autoimmune diseases, heavy metals and even parasites as side effects of Lyme and its coinfections that create their own additional problems. The whole thing is complex, but all the treamtnent plans I've seen are variations of this philosophy:


1. Kill the Lyme and other pathogens.
​
2. Support the body in the proccess.



My first visit with my new LLMD was overwhelming. The office made me feel dizzy and sick, but she was by far one of the quickest and sharpest minds I'd ever met. Although she wasn't the warm and fuzzy type, I could sense that her desire to treat Lyme patients came from a place of conviction and passion. She was extremely well versed in the complexities of the pathogens, every body system involved, and had vast knowledge of Western, Eastern, and advanced treatment modalities. She was one of those doctors with a researcher's mind, and I could tell she devoured every medical journal article to tertiary treatment modalities on the topic.

While she said she was confident that she could help me, it was clear that the road would be long and hard. Her protocol for me ranged from pharmaceutical antibiotics (more a day than anyone should take in their entire life), to IV's, IVIG, bioidentical hormones, colostrom, bone broth and medicinal mushrooms. She referred me to Lyme literate G.I. specialists, hormone specialists and muscle testers and ran TONS of labs. We did all of the Igenix testing for Lyme, and I tested postiive accross the board, even by CDC standards and also learned that I was immunodeficent. I never left her office without spending well over a grand on supplements, labs, and perscriptions.



Picture
One of my many "supplement centers" at the time. This one was in my kitchen. I had more in the refrigerator, another batch in my bedroom, and another in my home office, depending on what time of day I needed to take them/with or without food.


​Inititally the treatment made me a lot worse. In the Lyme world this is called "herxing" and I thought it was a good thing because it meant that the infection was being treated. I had new neurological episodes - loss of feeling my body in space, or feeling like I was walking into the floor. My retinas would get so inflamed that my eyes would pool blood, and for the first time in my life, my perfect skin was covered in acne.
​
There were some ways in which things got better over time, with continuous mineral and electrolyte supplementation, I stopped having seizures and fainting. And my interstitial cystitis got to a very tolerable baseline - that would only flare if I was stressed. My constant nausea and pain also improved, but the improvements were dependant on medications, supplements, infared saunas, epsom salt baths, and most of all, avoidance of chemicals and doing much of anything.

On the other hand, my chemical and food sensitivites had gotten a lot worse. It began to spread to deodorant, any non-organic laundry product, people's hair products, car fresheners, foods that were packaged in plastic, and nail polish to name a few.



​Aching to accomplish something for the first time in two plus years, I decided to sign up to do yoga teacher training at the cozy little studio around the corner from my house. The owner was very understanding of my situation and offered to make a little makeshift bed for me when I needed to lay down. She had also happily agreed to send out an email requesting that no one wear perfume or cologne during training.

The first evening I showed up and two people were wearing perfume and cologne. I wanted to walk out right then, but decided to push through. When we went around a circle to introduce ourselves, I explained my condition briefly and asked kindly again that people no wear fragrance during teacher training. The whole evening I felt dizzy, faint, confused, nauseous, fevery and like my head was going to explode. My face was bright red. It was the first time in a long time that I had pushed myself through an exposure. In the past year if I went anywhere that I felt sick, I'd leave. If I sat next to someone with perfume, I'd move.


That night, though I had to be up and back to the studio the following morning (which would have been hard for me in and of itself), I spent the entire night wide awake, swollen throat, inflammed everywhere, writhing in pain, and vommiting from forcing myself to endure the exposure. It took everything in me to get to class the next morning, but it meant so much to me. I walked in the door and someone was still wearing cologne. I sat down on my mat and tried to stay, but when the teacher came by to see how I was I had tears in my eyes and told her I had to leave. I walked home slowly and snuggled up with Clementine and Coquette in my soft bed in my dark room and cried.



​
Chapter 11
When I Thought Things Couldn't Get Worse
After about a year with little improvement, I felt that my LLMD wasn't taking my chemical sensitivities and their increase in severity during treatment seriously enough and decided to stop working with her. Throughout this time I had continued to see the Naturopath who first diagnosed me for bi or tri weekly IV's. In that time, she had begun to study with Dr. Klinghardt in Seattle and one of Dr. Klinghardt's best physicians had begun flying to LA to treat people. I decided to book a consult with her on her next trip down.

​Since I had a few weeks until her next visit I took myself off all the pharmaceutical antibiotics (these generally aren't part of the Klinghardt protocol) and decided to do 6 Ozone UVBI sessions in two weeks. The doctor administering the ozone UVBI advised that I go slow, but I was so frightened of the pathogens coming back, that I did more sessions than I probably should have.

At that time I also noticed Clementine starting to act a little differently. She had always followed me every second of every day, her and Coquette even getting out of bed to accompany me to the bathroom in the middle of the night and back. She seemed to be uncomfortable being held. I took her to her vet and remember walking into the vet clinic and the chemicals in there hit me like a wall. I could barely breathe or think, I felt my throat closing up but stayed with it for Clementine. After many tests and going to see a few secialists, I found out that week that she had large cell intestinal lymphoma. I bought an air filtration mask for myself online so I could take her to chemo at the veterinary cancer center in LA each week.

She died 3 weeks later. I was up all night with her on the Fourth of July while she vomitted and took her to the emergency vet first thing in the morning. I was told the chemotherapy had wiped out her white blood cells completely. I had to put her down. She was only 7 years old.

​
Picture
Clementine cuddling me when I was sick
You'd have to know me and the relationship I had with the girls to understand, but I went into the most unfathomably dark period of my life. Coquette missed her sister more than I could stand to see. I would cry until I couldn't breathe. Clementine had been the light of my life since I I found her and Coquette at the shelter, and she was gone.

I remember secretly blaming myself. I couldn't even speak it out loud at the time, but believed that if I hadn't been so sick, I could have done more for her. I would have found a holistic vet. I might have found some obscure cure. Instead, I did what my long-time vet told me to do. 

After the three incredibly hearbreaking weeks taking her to chemo, exposing myself to chemicals, and carrying her in and out of the car alone, my reactions went from barely controllable to completely out of control. Prior to that, I couldn't have imagined them being any worse.

I began to have reactions to electricity, my computer, and certain lights. My sense of smell became so acute that I could smell and get sick from someone's deodorant across the street or at the beach. Prior to this my social outings consisted of going to the beach or the farmer's market even, things in open air. Now it was no longer possible. My friends were also no longer able to visit unless they went through painstaking effort to wash all products off their person, and not encouter any chemicals en route to my house. I felt terrible for asking them to do all this for me, and even more terrible when they'd arrive and I'd still get sick from something they were wearing. It could literally be their face lotion at this point. Every smell hit me like a wall, triggering all my symptoms.

I wore a mask when I went out and people stared, but even that didn't really work. I grew more and more isolated.


Around the same time I met a woman in my Naturopath's IV room from Europe who was in the states getting treatment and enroute to Boston to be tested for Mastocytosis, a very rare disease that causes severe and irreversible damage when exposed to chemicals. She was a filmmaker and her husband was documenting her journey with chemical sensitivities and she encouraged me to get tested.

Testing was invasive, required flying to Boston, and with my new electromagnetic sensitivities, I was more afraid to fly then ever. I shelved the idea until a few weeks later when my 23andme (genetic) results came back and the first alert I had was that I carried a gene associated with a rare disease, Mastocytosis.

​I knew from my research the the disease was very serious and required treatment from a Hemotologist/Oncologist. I made an appointment with a very reputable one in Beverly Hills who ran many more tests and confirmed the JAK2 mutation. He was concerned about my white blood cells coming back as "urgent" lows (I was used to that part), and recommended I go to Brigham Woman’s hospital in Boston for further testing. Since I couldn’t fly, this was a dead end. I collected myself and decided to take another path.

​
Picture
Wearing my mask to go to the organic market for groceries. I remember people would always stare at me, sympathetically for the most part, but it embarrassed me. There were a few times I saw people I knew. Where I usually would have run up and thrown my arms around them and loved to catch up, I would walk the other way, hoping they didn't see me. It was just so hard to explain the weird illness.



Chapter 12

A New Way of Healing



Eventually I found myself in an office in LA, sitting infront of one of the highest respected doctors in the world of Lyme Disease. I liked her a lot. She was smart, fun, and kind, with a presense more calmative and sparkling than a really good drug. Most of all, I liked her approach to healing. No more drugs. She would fly to LA once a week from Seattle and I would implement her treatment protocol with local doctors between visits.

At this point I could no longer tolerate any of my ex's personal care products, but he refused to change them to natural ones. If it were just that, I might have asked him to leave, but I also started reacting (through the windows) to the gardeners outside, and just not feeling well in the LA air at all. I was also still heartbroken over Clementine, expecting to see her every time I turned around.

One of my friends that I had met in treatment had a house and guest house in the Hollywood Hills that had been entirely outfitted for MCS after she left treatment in Dallas at a well known center for Enivronmental Illnesses. She had an ozone swimming pool, the most intense home air and water purification systems I'd ever seen, and an infared sauna made special for chemical sensitivities. She invited me to move in with her. While I was sad to leave my home in Hancock Park, it seemed like the perfect solution, so Coquette and I moved in with her.

It didn't end up being what I thought it would. I thought we'd have fun and support eachother in our treatment, but it ended up being bizarre and uncomfortable. She became convinced that Coquette was making her sick and I had to keep her locked in my room. There was also an occasion where I was eating some organic gummy bears and she had a reaction to them and scolded me for bringing them into the house. On the other hand, she once had a friend stay the night who was wearing the most intense cologne that I had to suffer through. When I was home, I'd spend all my time in my room because I felt bad that Coquette had to be in there alone all the time. Then my friend complained that I wasn't spending time with her.

At that point, with both of us unhappy and our friendship at stake, I knew I had to move again, but with my chemical and electromagnetic sensitivities, there was nowhere I could go.

With a very heavy heart and nowhere left to go, I decided to move back home to Washington State to treat full-time with my new doctor.



As of right now, I have not finished this story. It took a lot for me to write this much, and when I had written if over five years ago, I had run out of free website pages and I honestly didn't think that anyone would read it anyways. Boy was I wrong! So for anyone who has gotten this far, I will finish this story one day - especially because the best part is yet to come!

The main reason people email me asking about the story is of course wanting to know how I healed. The answer (which I'd thought at the time was self-evident) is through doing the modalities that I now teach. It's why I started this business - because after everything I went through, they're what finally truly worked.

​I didn't want anyone else to have to suffer any longer if there was an answer out there, so I started offering my services for free to see if they'd work for others, and when they did, I officially opened up for business and went through more training.

To read about how I healed (not in story form), check out my "about me" section, "letter to anyone struggling" and
the information on the "for radiant health" page. 
© Copyright 2015 meadowhealing.com. All Rights Reserved.
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