A question I get a lot these days; now that YOSAKIME or YO SAKIME, is getting more attention and notice; is this: WHO IS YOSAKIME?
The answer is simple. I AM YOSAKIME. And the “I”, is … Les Booth.
I have been living with the effects and fall-out of MCS (Multiple Chemical Sensitivity) now for just over 12 years. It’s not been an enjoyable road, but it has been most informative; a transformation; and – well, lonely. So I decided to do what I do a lot of: start a Blog.
The first blog I began regarding my current health condition, was not about MCS. It was about Mold Allergies. Because that’s how it all started. A diagnosis that said I was allergic to mold.
In late 1999 I began to notice an increase in a dryness on my hand. A patch of dry skin, on the outer edge. It had been there, appearing mostly in the winter; staying most of it; but never growing more than a 2″ x 1″ patch, at most. But in 1999 it began to spread to my fingers. Nothing really big or bad, but a noticeable increase in range.
Then in late 2000 I noticed a similar area on my buttocks. I didn’t make a correlation. Since I was an avid long distance kayaker (for pleasure and exercise) I just assume it was ‘paddler’s butt’; a condition that results in rash and dry areas (in post rash) due to exposure to wet conditions. Not unlike diaper rash. Yet, this was different. In late 2001 – specifically New Year’s Eve – a couple of days after spending the midnight hour – in the middle of the Wabash River – toasting the fact that the water was still open; and warm!; I began to notice a more troublesome rash. One that no matter what I did to ‘home-remedy treat’, it would not go away. It was, in fact, getting worse.
By February I had to get medical attention. My doctors first reaction to seeing my ‘condition’, was, “MY WORD! That’s got to hurt!!”. This response was echoed by other physicians in 3 different disciplines, over the next 3 years. My doctor prescribed and I used an ointment that – as he said – “This will take care of the problem and I will soon be your next best friend.”. To my pleasant relief, the rash – and the pain – vanished; just as he’d promised; in a few short days. But my enjoyment was short lived. For within 3 months it was back with a vengeance.
At this point I began a search that would last 3 years before I actually found the answer for ‘Why?’ and ‘What is it?’ But, along the way I was prodded, tested, plugged and misdiagnosed over a dozen times, by an equal number of well meaning, but clueless physicians and healthcare specialists.
Along that journey, at the behest of my very nice and well meaning dermatologist, I went to see a noted Allergist whom she recommended. The Allergist was both very knowledgeable and a most agreeable man in his early 80s. For him, age was in no way a deterrent to being a conscientious doctor. However, even though the tests he gave and his near immediate, but secret-from-me until the end of the first visit, diagnosis – showed I was ‘conclusively’ allergic to mold: all 11 known species, in fact.
At that point I began an allergen immunology program; regularly scheduled – over a nearly 3 year year period – of gradually increased injections of, “doses of an allergen (substances to which the allergic person responds to negatively; thus, allergic;) with the aim of inducing immunologic tolerance.” (Wikipedia: Alllergen immunology).
Only one problem. I was not, nor ever was, actually allergic to mold. But my expressions were as real as any allergy diagnosed, treated and endured. This is one of the more insidiousness channels MCS leads a person down. In the early stages one has no idea with what they are truly dealing. It is an unknown. A condition, that will in due time reveal itself; one-piece-at-a-time; more all the pain-filled-time.
The big problem with not being allergic, was not fully realized until nearly 8 months into the ‘AI-shot-series’. I started to notice what was later found to be a mild anaphylactic response to the shots. Then in the 14th month I had a rather startling reaction. All shots were halted. The allergist wanted to conduct more study. But I said, that was enough. I was stopping the shots. I would rather live with an allergy to mold than take the chance of dying from the so-called, cure.
Besides, this was all too familiar. I’d already had a near-death experience with an anaphylactic response to an accidental injection of shrimp. At which time I realized the connection to chitin and an acute response I had to it.
Following the troublesome reactions to the allergen injections, I began writing the Mold Chronicles. The purpose was to chronicle, as it were, my experiences with this new found mold allergy. To make it all more interesting, just because it [the mold allergy] didn’t really exist, did nothing to quell the palpable, discernible and clinical revelations of a physical problem. The ‘problem(s)’ existed. I just had no idea WHY or HOW to define it: yet. It just became evident that no one knew what it was – exactly – that I was beleaguered by.
One of the many problems experienced during my ‘misdiagnosed mold era’, was the pervasive problem with memory loss. Whole months went by without so much as a discernible memory. Had I not been steady in taking photographs, blogging and taking notes on what I was doing, when I was doing it… I would have no memory of much of the 3 year period – 2003-2006.
Additionally, during this period I was constantly under the stress of the skin irritations and constant flu-like symptoms. Thus, my ability – not to mention any desire – get things done, was pretty much nil. So, my posts to the Mold Chronicles blog were sporadic at best. Fortunately, there are notes from other activities and calendar notations that will allow me to ‘fill in some gaps’.
— more to come