The Beginning of a Diary (of a sort)
Chronicling My Battle With a Debilitating Disease
First, let me say that I hate blogs. I don’t even like the word ‘blog’. And, I’m not usually the type of person that is compelled to push my personal nonsense on strangers. But, these things are not what I’m here to talk about, and maybe there’s even a small chance that my ramblings here will either be found helpful to someone, or may give someone experiencing a life with eczema a sense of camaraderie in our daily torment.
I am here to talk about eczema. Actually, I think I’m here to vent about it, as I have been suffering with this condition for almost 30 years and it has recently grown to become the bane of my existence.
When I was 11 or 12 years old I was diagnosed atopic eczema, which is synonymous with atopic dermatitis. It is a chronic disease that is estimated to affect 30 million Americans to some degree or another. I, now, happen to fall into the acute category. At age 11 or 12, however, my eczema was rather light: I had patches of dry, irritated and itchy skin just above the folds of my elbows and behind my knees. I was prescribed a mild corticosteroid ointment and told to use only mild, hypo-allergenic soaps when washing and bathing. Life was peachy, my skin was easily controlled, and my visits to the dermatologist were infrequent.
Throughout my teens, all I really needed to know was that I had a rash that came and went, and while I had my mixture of triamcinolone in Lubriderm lotion, I was prepared for the rash when it did show up. Yes, it bothered me, but with all things in perspective, it didn’t bother me much.
In 1996 I learned (the hard way) that eczema-prone individuals also inherit a risk for asthma. In my case an allergic-only asthma that was triggered by a number of airborne chemicals used in the semiconductor plant where I worked. It had taken me two and a half years of suffering with severe bronchial inflammation, and an ever-increasing repertoire of inhalers and pills prescribed by a multitude of general medical practitioners better at guesswork than at healing, before I sought help from a pulmonary specialist who immediately recognised the symptoms, took me off all the medications I had except one, and said “get a different job”.
There was no ‘cure’ for my asthma apart from removing myself from the allergens that caused it. There was no medication capable of mitigating the inflammation that made breathing extremely difficult. As soon as I informed my pulmonologist that I worked in the semiconductor industry, he said, “Get a new job. I would tell you the same thing if you worked in the air conditioning field, or construction, or anything similar. Get out. Get a different job.” He kept me on an emergency bronchodialator, a common steroid called albuterol, and sent me on my way.
The following day I asked my manager to be reassigned in the company due to my now correctly diagnosed medical infirmity, and I was given a new but related position in the department, working at desk situated well away from the chemical laden manufacturing area. It took another two years before my health was fully restored and I was able to breathe normally again.
I was in good shape until in 2004, when I took a temp job that put me in the basement of an aircraft manufacturing plant. This was the first position where I noticed a distinct and overwhelmingly odd propensity for workers to bathe and souse themselves in perfume, cologne, body spray, and anything else that wreaked and formed clouds of acrid, burning, and wholly oppressive stink, just to sit a desk for eight hours.
Within a couple of months my asthma had returned, with full-on vigour, and shortly afterwards, my eczema had spread to cover almost eighty percent of my body. My desk was moved from cubical to cubical in a meagre attempt to “move me away from the perfume”, but there was no escaping it. The air systems carried the chemical clouds throughout the building, and the sheer quantity of perfume and body spray that these people had worn so thoroughly infused the walls, carpets, and furniture that the place had taken on a foul smell of its own–that was present even before anyone arrived in the morning.
I went to work, braced for the pain, and spent the days breathing through wet paper towels in order to filter out a small portion of the perfumes that permeated the air. My face, neck, and arms had developed welts of cracked redness that made me appear as though I had been beaten. Yet, despite my suffering, a work-from-home option was denied me.
In 2006 I was released from that prison, and found a new job with a company whose management and employees were amenable to stopping the use of perfume, and where I was placed at desk in a separate computer room with its own air conditioning system. And once again, two years later, my body had finally recovered from the damage of the previous two years.
In 2009 I found myself unemployed, but I was happily no longer plagued with the daily pain associated with the symptoms of my eczema. My asthma had disappeared, except for those times when I found myself in places filled with perfumes and body sprays. I spent all of 2009 job hunting, with the perpetual fear that I would never find another job where I could safely do my work in the office, without a relapse of eczema and asthma thrusting me into the enveloping pain and chronic discomfort that I had previously experienced.
To my unfortunate dismay, I found another job in early 2010, and quickly realised that I may never be free of this misery.
As I write this, my entire torso, neck, face, scalp and arms are covered in an unsightly patchwork of raised, bright red inflammation. Two weeks ago, my legs had been covered, as well, but my dermatologist granted me a prednisone taper that greatly reduced the inflammation–albeit, temporarily.
My body simply has no idea what it’s doing any longer. I have been working primarily from home for the past few months, and keeping myself shut-in as much as possible. I have a daily regimen of moisturising every hour, drinking almost two gallons of water, and snuggling with an ice pack to ease the intense burning that never seems to go away.
If there is nothing else this ‘blog’ project I have undertaken will do, maybe it will at least be viewed by one person without eczema, who might find compassion and understanding in themselves to mention it to others that a simple, small, selfless act such as limiting the amount of fragrance one wears can contribute to drastically improving the life of someone else.
Maybe I will be able to provide some level of support to those who do suffer every day with this disease.
I plan to add the results of what research I do, and review products and medications that I try, or have used over my history with eczema. Hopefully what resources I post and link to will be useful to others, and possibly someone will find relief due to something I provide here.
