I noticed the connection between my severe symptoms and my environmental sensitivities when I sat in the sports dome in Montreal as I watched the Argos play football against another team.
I couldn’t focus on the game because my skin, lungs, eyes and nose were burning, my muscles felt as though they were draining off my body in long and painfully clumps, there were wavy lines traveling through my body, my head felt as though snakes were crawling inside my skull and at random spots they would bite my brain creating a stabbing pressure that abated to a dull throb.
My eyes were blurring and I got sleepier as I sat in my seat. Throughout the duration of the football game I was having a conversation with the voice in my head that kept telling me that I was stupid for not being able to watch the game just like everyone else. It kept pointing out that: “this person and that person was having a good time, and I was being my normal self and not wanting to enjoy myself”. The voice mocked me by saying: “that if there was something really wrong with me then I should be able to get up and leave just like that person was”. When I didn’t get up, the voice dug in deeper by pointing out that: “There was nothing wrong with me, all I wanted was attention”.
I wanted to get up but I was experiencing conflicting motivations. My body ached so badly that I couldn’t fathom the thought of moving and walking up stairs, but as I sat there I kept feeling worse. And I didn’t know what to do. When I eventually got up, I walked up and out of the dome and into the concession area to notice that there was a distinct difference in the air quality. I was disoriented and the world around me was moving in directions in opposition to the normal senses (sort of like looking into fun-mirrors at a carnival).
It turned out that I sat and listened to the voice for the entire football game because as soon as I got into clearer air my high school band class came out of the dome and it was time to go to our hotel. The next day I was coughing up thick yellow/green/brownish chunks and the center of my chest burned.
The symptoms didn’t start as soon as I sat down they began the moment my high school wind ensemble stepped on to the field and began to play the Canadian and American National Anthems for a crowd of eager sports fans. I noticed a change in my vision, I felt something form over my entire body and my head felt foggy. We started playing and my hearing became patchy and distant and my body progressed from internally vibrating to a heavy sinking feeling. I couldn’t remember the notes to the anthems and at one point I forgot what anthem we were playing so I dropped my left arm and held my flute with my right hand as I slumped to the side in pain and very annoyed at the fact that I couldn’t sit down.
Sadly, this was most likely televised and many people saw some girl obviously pretending to play her instrument. I probably looked as though I didn’t want to be there, but I was in so much pain.
This was in the Spring of 2003 and I was out of school for 2 weeks and I didn’t feel better until 4 weeks after I got back from a week long trip to Montreal.
Over the years I have tried getting help with my situation. I have been told countless times that I just experienced a really bad flu, I had a lung infection, one doctor even told me that what I was experiencing isn’t real because from known literature only specific symptoms were ever reported with tobacco exposure. The idea that I was experiencing these symptoms because of my exposure to cigarette and other tobacco products was not an option. And when I found a doctor who would listen to that idea I was told to abstain from the environment or plug my nose and everything would be okay. Those options don’t help because I can smell the smoke long before I can see the smoker so I have not defense. And even when I wore a mask the scent would penetrate it and would smell sweeter and have a stronger and longer effect on my body.
Over the past two years I have pinned my reactions on commercial chemicals and tobacco products. I had noticed that there were certain foods that I could and couldn’t eat when I was effected and I thought that I had an idea of how to defend and protect myself. It was ( and has been difficult) to find support from people when I mention what my ailments stem from and because of that I spiraled into a deep depressive and choatic mental state. It wasn’t until 3 months ago that The Environmental Clinic in my area diagnosed me with having multiple chemical sensitivity and referred me to a family physician in my area that dealt with patients with this sensitivity.
Now here is the big problem:
For the past 12 months I have been having trouble eating. At first it started with eating anything and experiencing intense pain all over my body and a need to sleep that could not be ignored. I went on an elimination diet monitored by myself (as I was discouraged by doctors and didn’t want to visit another one) and I took out dairy and gluten and sometimes meat. I thought that I had it under control until the foods that I deemed were appropriate from my functioning created intense pain and the need to sleep. For three days I ate peanuts and cookies. I then realized that gluten and dairy were not my problem because I devoured chocolate cookies for breakfast, lunch and dinner and I was symptom free. I was also noticing that the sharp stabbing pain in my heart, that I had been experiencing since I was about 9 years old, occurred more frequently and lasted much longer. I was now experiencing shortness of breath and numbing/tingling pain in my left arm with each episode…(my heart has been monitored for a week, a time, a few times, in high school and the reading showed no abnormalities, I have also been to the hospital and they did a heart reading and that showed normal functioning).
Eight months ago I decided that I was going to eat the diary and gluten free diet and sleep whenever I needed to. I wasn’t working so I had the luxury of sleeping 8-10 hours at night and an 1 hour here and there when I ate a meal.
I finally got an appointment and the Environmental Clinic did their tests and I have a gluten intolerance, I am low in vitamins and a mineral and a few other things are wrong.
Here is the bigger problem:
Two months ago I realized that I couldn’t eat cooked foods, so I cut out meat and quinoa and cooked vegetables from my diet. I was cool with that because I have this notion that my body doesn’t produce the right amount of enzymes for proper digestion and I wanted to go on a raw diet. I started my raw diet and started noticing that I couldn’t eat certain food items without experiencing tightness in my chest, increased phlegm, wheezing, pain and heat all over my skin (stronger on my chest and back). I then realized that these foods cross related to the food items that I am allergic to. I disregarded the fact that I am sensitive to dark leafy greens and peanuts and tree nuts and made kale/spinach smoothies and ate nuts everyday because I needed to put vitamins and protein in my body. I was experiencing mild symptoms and thought I could live with them. Multivitamins make me feel as though my chest is filling up and my throat feels expanded. I don’t understand what that means so I don’t take multivitamins. I stopped eating peanuts and tree nuts when my chest started getting tight, phlegmy and I began wheezing and I stopped drinking smoothies when I needed to sleep and my body started to hurt after I started drinking them.
Here is the biggest problem:
The family physician that I was referred to has not thought to refer me to a dietician and I mentioned from my first visit that all I can eat is peanuts/tree nuts and Kale smoothies. I told her that I have chest tightness and stabbing heart pains. She wondered if I had an EEG, I mentioned the monitoring in high school and I told her that I had a chest x-ray with the Environmental Health Clinic and that they would send my results to her (I haven’t received a call about the x-ray so I assume that everything is fine). After our first visit she told me that because of my age she doesn’t believe that I have anything wrong with my heart or lungs and that my pain is from anxiety. When my blood work was transferred to her she was stunned at my results. She didn’t mention anything about my IgE value being in the high 900s when the maximum level is 300 (I know because the Doctor at the Health Clinic told me and ordered a stool test because she believed I could have an intestinal parasite). I’m sure there are other puzzling readings from my test but I don’t know what they are.
I also have a low white blood cell count. The only test this doctor wants is another CBC, but I am not physically well enough to give anymore blood. The blood I gave for her physical disrupted my ability to eat, I was fatigued and in pain for over two weeks and I craved foods that I shouldn’t eat but ate because they were the only food I wanted and I paid for it each day.
As of this moment the only things I can eat (and honestly I am reacting to it as well but the symptoms are mild) is sprouted buckwheat, avocado and hemp oil. I eat a tablespoon of raw honey to “boost” my immune system but I react to that as well but I don’t know what else to do. I take 5000 IU of liquid vitamin D3 because the doctor mentioned that I might be sensitive to the fillers in vitamins and I am deficient. I purchased “Rejuvenate Cell Therapy” and have been placing that in my water, I don’t feel good each time I take a sip of water, but I need to drink it. I am so fed up with doctors, and people thinking that they know.
I wasn’t sad until I got to this point in the letter because there is something wrong and I can’t get proper help and I believe I am dying and it’s a waiting game for me right now. I don’t go outside unless I need to buy food, because outside smells of car fumes, laundry detergent, shampoos, perfumes, cigarette smoke…
I asked one doctor if I would have to die before I got help and he said yes.
This will help others with similar symptoms to mine and I hope they will get help before it gets really bad.
Liked by jodooley