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Before the diagnosis.

Fortunately, I had then and continue to maintain a great respect for doctors and other members of the medical profession. Somehow, I understood implicitly that there was a missing key to help them diagnose my condition. With that in mind, when I felt better , I returned to my studies and active life as a high school senior and refrained from harboring resentment toward the physicians overseeing my case.

Periodically, during my early college years, I had similar occurrences of the elusive pain and intense weakness. These episodes were bearable and lifted after a week or two as unexpectedly as they appeared. On the occasions that I did have symptoms of the mysterious illness, I incurred the same problems as I previously had experienced. Despite heroic attempts to diagnose me, the physicians could not find anything wrong on their standard lab tests; thus I was once again perceived as a young woman who exaggerated her medical condition.

The next few years were intermittently healthy ones for me. Until I married and had my daughter, Lelia. At that point , the same series of of symptoms began to occur but I I ignored most of them as best I could and concentrated on my baby . I enjoyed motherhood in spite of my health difficulties and often mistakenly chalked up my bouts with the strange ailment to the demanding activities required as the mother of an infant and then toddler. I pressed forward in a determined fashion but there was a difference between me and my friends. But they seemed to be able to interact with their children with a wellspring of energy and rarely commented on being exhausted. I, on the other hand, had a few healthy days, but I was most often at the point of physical collapse. To combat my frequent periods of exhaustion, I overloaded on coffee, peaches and cookies throughout the day. Caffeine from the coffee was the stimulant I needed to stay alert. The cookies gave me a boost of energy and improved my sense of well-being, while the yummy, super-sweet peaches made me feel I was doing something healthy. Interestingly, I learned years later about the glucose effect in the acute Porphyrias and that I was responding to my body’s yearnings for carbohydrates.

One of my biggest problems was that I had the “hypochondriac” tag placed on me because no matter what tests a doctor gave me, I was NORMAL. Thus, , I slipped into my same secretive wariness because I didn't want the doctors to assume nothing was wrong with me. Instead I was VERY SICK. I am sure this has happened to most of you.


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