{"id":4002,"date":"2021-05-28T12:32:09","date_gmt":"2021-05-28T16:32:09","guid":{"rendered":"https:\/\/aseq-ehaq.ca\/?page_id=4002"},"modified":"2022-12-07T12:08:35","modified_gmt":"2022-12-07T17:08:35","slug":"when-the-invisible-illness-becomes-visible-or-monster-lady-comes-for-a-visit","status":"publish","type":"page","link":"https:\/\/aseq-ehaq.ca\/en\/when-the-invisible-illness-becomes-visible-or-monster-lady-comes-for-a-visit\/","title":{"rendered":"Your Voice Matters"},"content":{"rendered":"\n
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Does Anyone Care<\/strong><\/a>
Ren\u00e9e Gabrych<\/strong><\/strong><\/p>\n\n\n\n

Lack of accommodation for a disability<\/a><\/strong>
Ginger Major<\/strong><\/p>\n\n\n\n

I am tired of living in hell<\/a><\/strong>
Olly Gabrych<\/strong><\/p>\n\n\n\n

Housing Crisis for People with MCS<\/a><\/strong>
Line <\/strong><\/p>\n\n\n\n

The Stolen Life<\/a><\/strong><\/strong>
S. Shepherd<\/strong><\/p>\n\n\n\n

Dead But Alive
What is sensitivity to chemical products (MCS)?<\/a><\/strong>
Sylvie Hach\u00e9<\/strong><\/p>\n\n\n\n

Nowhere to Run, Nowhere to Hide<\/a><\/strong><\/strong><\/strong><\/strong>
Muriel L\u00e9tourneau<\/strong><\/p>\n\n\n\n

When Life Becomes a Nightmare<\/strong>
My story of living with multiple chemical sensitivities<\/a><\/strong><\/strong>
Danielle Castonguay<\/strong><\/p>\n\n\n\n

I Suffer Too Much, I Can\u2019t Keep Quiet Anymore!<\/strong>
I feel inspired by a mission<\/strong><\/a>
Line <\/strong><\/p>\n\n\n\n

When the \u201cInvisible Illness\u201d becomes Visible<\/strong>
Or \u2013 Monster Lady Comes for a Visit<\/strong>
Lisa Edelsward<\/strong><\/p>\n\n\n\n

The story of a teacher<\/a><\/strong><\/strong><\/strong><\/strong>
Marlene<\/strong><\/strong><\/p>\n\n\n\n

Living with the Feeling of Being on borrowed time<\/a><\/strong><\/strong><\/strong><\/strong><\/strong>
Isabelle Martineau<\/strong><\/p>\n\n\n\n

MCS: A Life-Altering Disability<\/a><\/strong><\/strong>
Ruth Woitowitz<\/strong><\/p>\n\n\n\n

Existing (NOT \u201cLiving\u201d) With Multiple Chemical Sensitivities<\/a><\/strong><\/strong><\/strong><\/strong>
Ruth Woitowitz<\/strong><\/p>\n\n\n\n

One of the Lucky ones!<\/a><\/strong><\/strong><\/strong><\/strong>
Debra Aronson<\/strong><\/p>\n\n\n\n

My Illness Journey<\/a><\/strong><\/strong><\/strong><\/strong><\/strong>
Sophie M.<\/strong><\/p>\n\n\n\n

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When the \u201cInvisible Illness\u201d becomes Visible<\/h3>\n\n\n\n

Or \u2013 Monster Lady Comes for a Visit<\/h4>\n\n\n\n

Lisa Edelsward<\/strong><\/h5>\n\n\n\n

I have had environmental sensitivities all my life, it seems. My mother told me stories of my reactions in infancy, from chronic coughing to allergies to the sun, but these all cleared up when we moved (when I was 5 years old) to a cleaner environment. Most of my childhood and early adulthood were relatively \u201cnormal.\u201d I traveled and worked all around the world \u2013 it was a wonderful life! I began having chronic health issues when I returned to Canada to attend in graduate school, living in the center of a large city. I had never thought of it at the time, but it was not far from my childhood home where I\u2019d had chronic health issues as an infant. At first, my symptoms were transient and annoying but not yet (it seemed) serious. Unfortunately, these things progress (and not in a good way). I finished my PhD and began my new career in research, but I was soon disabled and unable to continue. Gradually, I was learning how to manage my life. But you know what they say about the problem of learning from experience \u2013 you have to have the experience! I could tell many stories, but today I will tell just one.<\/p>\n\n\n\n

In 2013, my husband was invited to the University of Sydney for one semester. As part of this adventure, we fulfilled a life-long dream of mine, and spent the month of January in the South Pacific, island hopping through French Polynesia and the Cook Islands. After two weeks in the South Pacific, I began to feel great<\/em>. I thought, \u201cI haven\u2019t felt this good in decades! I never want to leave!\u201d<\/p>\n\n\n

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Feeling great in Australia, 2013<\/figcaption><\/figure>\n<\/div>\n\n\n

When we flew to Sydney. I felt much worse as soon as we landed in this big city. But soon I learned how to make the best of the Australian environment: our apartment was just a bus ride away from the sea. I discovered that I felt great as long as there was nothing and no one between me and the sea air. I would stand with my feet in the water, with the sun bathers on the sand behind me, and breathe in the healing sea air \u2013 great! But when I stepped back onto the sandy beach, I felt overwhelmed by clouds of sunscreen and other smelly personal products worn by the other bathers on the beach. The positive effects of the sea air were so obvious that my husband said, \u201cMy job is at the university. Your job is to go walking by the sea.\u201d<\/p>\n\n\n\n

Australia proved to be the perfect experimental situation that proved the effects of even minor pollutants. I experienced several months of extremely clean air on a daily basis, but also short periods of minor exposures on a daily basis, too, and the effects were very, very obvious. Over this four-month period, I experienced gradual but very significant improvement \u2013 and also rapid relapse (within 24 hours) on our return to Canada.<\/p>\n\n\n\n

After our return from Australia, we rented an apartment in the city center near my husband\u2019s work. While looking at apartments, we visited one which had recently refinished wood floors \u2013 and afterwards, I had no memory whatsoever<\/em> of that apartment, except for the potent smell of floor varnish.<\/p>\n\n\n\n

Later that year, I experienced one of my most serious reactions during a series of chemical exposures. I experienced severe facial swelling, which I call \u201cMonster Lady.\u201d One morning in our Montreal apartment in November, I woke up to discover that \u201cMonster Lady\u201d had arrived for a visit. I had no idea what I was reacting to but guessed that it was probably related to the renovations in the underground parking garage where they were pouring cement. Our apartment was on the 7th<\/sup> floor, and the parking garage was 9 floors below us, but I could find no other possible source. I was not able to distinguish the particular smell that was bothering me, since the city air pollution mixes so many different smells. No one else in the building could smell anything, nor had any reactions, but I suffered severe facial swelling and rash.<\/p>\n\n\n

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First and second day of \u201cMonster Lady\u201din our city apartment, November 19 & November 20, 2013<\/em><\/figcaption><\/figure>\n<\/div>\n\n\n

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I waited three days hoping the situation would improve, but it did not so we left the apartment and went to our house in the woods. On the way, notwithstanding the traffic pollution, my face began to improve slightly.<\/p>\n\n\n\n

Unfortunately, just after our return, the furnace in the house malfunctioned and spewed oil exhaust and fumes throughout the house. My condition worsened again. After a few days, I was finding the situation intolerable, so I tried living on our porch for almost a week (in December, at -10o<\/sup> to -15o<\/sup> Celsius), sleeping on our summer chaise-longue with fake fur blankets and a down sleeping bag. But because I had to go into the house regularly to use the facilities, make food, etc., I did not improve significantly.<\/p>\n\n\n

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After furnace malfunction, November 27, 2013<\/em><\/figcaption><\/figure>\n<\/div>\n\n
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Living on the porch, December 1, 2013<\/em><\/figcaption><\/figure>\n<\/div>\n\n\n

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In another unfortunate coincidence, my doctor was away just at this time and I had run out of my antihistamine prescription, which helps to reduce symptoms. I use a prescription antihistamine (diphenhydramine) which is compounded to be especially pure, without colorants or fillers or anything else, because I react to these added chemicals. In desperation, I went to a walk-in clinic to ask for a new prescription for this common antihistamine. The doctor there took one look at me, panicked, and demanded that I go \u2013 by ambulance (although I had driven there, and despite the fact that this reaction had already been going on for almost two weeks) \u2013 to the hospital Emergency Room. Because of the severity of my facial swelling, she feared I might have a life-threatening reaction, such as throat swelling. I tried to explain that I had had this reaction numerous times without serious complications, that what I needed was my prescription, but she flatly refused to let me leave except via ambulance. I felt like a prisoner under arrest!<\/p>\n\n\n\n

The ER was, of course, heavily scented with antiseptic cleansers and the personnel were wearing scented personal products, none of which helped, of course. The ER doctor was convinced that I had a potentially life-threatening bacterial infection, showing me pictures of erisypelas<\/em> on his phone. (Yes, even doctors sometimes turn to Google for assistance.)<\/p>\n\n\n

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Erysipelas, a relatively common bacterial <\/em>infection<\/a> of the superficial layer of the skin.<\/em>
Photo credits: from Wikipedia, By CDC\/Dr. Thomas F. Sellers\/Emory University – This media comes from the Centers for Disease Control and Prevention&#039;s Public Health Image Library (PHIL), with identification number #2874. Public Domain, https:\/\/commons.wikimedia.org\/w\/index.php?curid=6898976<\/a><\/figcaption><\/figure>\n<\/div>\n\n\n

I insisted to the ER doctor that, no, this photo of the infection may look similar, but I did not have erysipelas. I said I was sure that this was a reaction which I\u2019d had many times before, and all I wanted was a new prescription for my antihistamine. He did some blood tests which did not confirm his diagnosis and he agreed to discharge me. He still insisted, however, that should this rash continue to spread that I must immediately return to the hospital for further testing and, if confirmed, start antibiotic treatments right away. (It was my understanding that an infection could possibly be in early stages and not yet detectable on their blood tests.) He was skeptical about the allergic reaction, but he (secretly) gave me diphenhydramine in the IV (which he had prepared in case of emergency) and was able to see for himself that this helped. But when he discharged me, he did not<\/em> write the prescription I was looking for. He merely gave me the name of an over-the-counter antihistamine, and without any alternatives (because by this time it was too late in the day to find another doctor), I tried it. Of course, I did react to it (as I knew I would) which further worsened my condition. This experience quickly taught me to avoid going to the ER where my chronic health conditions are simply not recognized. The next day I had to return, once again, to the walk-in clinic doctor to request, once again, the prescription for the pure, compounded medication that I had originally asked for. The clinic doctor was satisfied by the ER diagnosis, so about 24 hours after my first request, I finally got my prescription. I took this antihistamine consistently to reduce symptom severity until (much later) my face finally healed.<\/p>\n\n\n\n

I eventually realized that I could not heal at home \u2013 the repairmen who had come several times were having a difficult time discovering the problem with our furnace \u2013 so, on December 2, I moved to a hypoallergenic hotel room to recuperate. There, the swelling reduced quite quickly. Unfortunately, although the swelling had started to go down, the rash continued to spread. I was finally able to consult with my own doctor, and she agreed that the rash might indicate an infection, for which she prescribed antibiotics. She also added a prednisone prescription to help reduce the reaction more quickly. Despite the antibiotics, my rash continued to worsen. I was getting desperate to resolve this situation as my husband and I were booked to fly to Hawaii on December 6! On December 5, on the evening before my scheduled flight early the next day, my doctor insisted that I must cancel my flight and go to an emergency room immediately for further testing (since only a hospital laboratory could provide immediate results). At this hospital, a different hospital from the first one I\u2019d been taken to, blood tests again confirmed that I did not have a spreading infection.<\/p>\n\n\n\n

This doctor on duty, based on the lab results, finally agreed that I was probably suffering from a severe allergic reaction. My doctor had earlier suggested that it was possible the rash might be an additional allergic reaction to the Vitamin E oil I was using to soothe my terribly uncomfortable skin, but I hadn\u2019t believed this because I was taking Vitamin E supplements daily without any reaction. But without any other ideas as to what could be causing this reaction to continue, I discontinued use of the Vitamin E oil on my face. Within 48 hours, my face began to heal, the bright red colouring began to fade and the damaged skin on my face began to peel off. I discovered that the label on the bottle was intentionally misleading: it was labelled \u201cPURE VITAMIN E OIL\u201d in large letters, but in tiny print on the back I saw that it was not<\/em> pure but was actually tocopherol acetate.<\/p>\n\n\n\n

With confirmation that the problem was now healing, rather than bacterial and spreading, I rebooked the flight for our trip. My face improved \u2013 but only after all the skin on my face had completely peeled off like a very bad sunburn. We succeeded in flying to Hawaii, finally arriving on December 9, and my face finally healed there. When we returned, I was much more sensitive than before and began experiencing some moderately severe reactions to many kinds of other, more minor exposures, things to which I had never previously reacted.<\/p>\n\n\n

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At the hotel: bright red skin reaction to tocopheral acetate<\/em><\/figcaption><\/figure>\n<\/div>\n\n
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The healing process: peeling skin<\/em><\/figcaption><\/figure>\n<\/div>\n\n\n

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Healed in Hawaii, finally<\/em><\/figcaption><\/figure>\n<\/div>\n\n<\/div><\/div>\n\n\n\n

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