I love radio! It’s such a fun and personable format. For those of you who missed my interview on THE VETERANS FORUM yesterday, it can be downloaded from the November 12 link at:
I will warn you that on the air the interviewer added to the original outline; the first 30 minutes are a detailed description of my trauma, Toxic Epidermal Necrolysis Syndrome.
Rather than subject you to this horrific and graphic description, I encourage you to fast forward the time stamp to 32:54 minutes; this is where the PTSD discussion begins. Or, all the way to 76:26, which is when the discussion turns to my ideas on healing PTSD.
One of the topics we didn’t get to discuss on air is the importance of PTSD education. Since this is an aspect of healing PTSD that I deeply believe in – the education of ourselves and of those living with, caring about and for us - I’m going to tackle it here today….
In the category of “Ooh, if only I knew then what I know now!” Or, “Why didn’t anyone ever mention that?” I offer the following story:
From the age of twenty-three to thirty-seven I was besieged by major illnesses. Epstein-Barr virus. Chronic Fatigue Syndrome. Celiac Disease. Mercury poisoning. Multiple sinus infections that finally lead to emergency surgery when the infection reached the brain barrier. My body was a host of various, uncontrollable problems. Then I took an antibiotic for a sinus infection and suffered an extremely adverse reaction to it.
Let’s pause for a moment here just to be clear:
In 1981 I took a routine antibiotic and suffered an extremely adverse reaction to it. Toxic Epidermal Necrolysis Syndrome is a rare illness (.5/million people annually); most doctors have never seen it, they do not know how to diagnose it, and it cannot be stopped. Once the illness begins there is no treatment for it; in worst case scenarios like my own, the victim becomes a full body second degree burn patient. We are given burn victim protocol and allowed to ride out the illness. The mortality rate is 40 - 70%. The biggest difference between life and death in this illness is the level of care.
In 1997, while the antibiotic adverse reaction was not as significant, it laid me up for a week. Just long enough for those parasites in my mind to go wild with an ecstatic source of their own nourishment. Another antibiotic, another reaction, another medical surprise, another fear, another trigger…. It was like a drunken frat party in my head.
While the reaction finally ceased, something in my body had been triggered and things were never the same. After that the annoying chronic illnesses went deeper, right into the organs that allow us to thrive. For the next seven years I suffered from a mysterious gastrointestinal disorder. I could barely eat. A part of my small intestine (we could see on the x-ray) had virtually shut down. In addition to that, my liver enzymes were skyrocketing, who knew why?
As the years dragged on my condition continued to defy medical knowledge. No one could find a cure for the host of food allergies I developed, the nausea, the cramping, the bloating; the incredible permeability of my gut that allowed no uptake of nutrients. I ate, and my body retained nothing. I was put on seventeen vitamins and supplements and prescription medications designed to nourish me and digest my food for me, and still, my calcium and magnesium remained dangerously low. My liver enzymes soared worrisomely high. Vitamin B counts barely made it onto the charts. I was at the borderline of anemia. My hair thinned. Test after test returned and now there were two kinds of bad news. The first, was some concrete problem. The second, was no problem at all, which meant there was nothing to cure although the problems persisted. Regardless of the hundred tests I was subjected to, I found no one to fix the systematic disintegration that brought my life down to a focus on calorie counting and wishful thinking. I was a medical anomaly, alone, a freak. Again.
Growing up with TBI – The Confabulation Kid - Originally posted on Broken Brain - Brilliant Mind: Looking back on my life and comparing notes with others, I realize more and more how much my experience...
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