Why didn't any of you really seem to see ME? You just saw the presenting symptom alone. I can understand how, in the beginning I looked like any other young woman. But certainly, when you told me I had an "athlete's pulse" and you knew I was a smoker (thank goodness for that 15 percent metabolism boost) and didn't exercise regularly (way too tired to even think about it). Didn't that puzzle you? Why didn't the low blood pressure concern any of you? Was there no pill for that? And when I was in your office with severe respiratory infection that required steroid tapers and heavy antibiotics, did not one of you wonder why my temperature was below normal? What exactly was it about me that made you discount what I had figured out so long ago? True, after a while I wasn't even overweight, but I think I wasn't absorbing nutrient after all the digestive problems. I was actually somewhat anorexic in those last years and my sense of taste had long disappeared.
Many things I never even mentioned to any of you. I never told you that my legs itched so much I scratched them until they bled (you call it statis dermatitis). Nor did I mention the restless legs that plagued me every night. That started long before there was commercial that alerted me this was a medical problem that I should want to medicate. I thought about seeing one of you for the carpal tunnel. But I typed a lot and I had become so surgery avoidant. That reminds me that one of you wanted to take my ovaries for those ovarian cysts, and I backed out the morning of the surgery. I'm glad I did, as the ovarian cysts disappeared. I don't remember if I even mentioned the joint and muscle pain. The neck pain was really the most severe. And I guess sometimes we don't realize we are losing our hearing until it returns. I was getting older after all, so what was a little lack of concentration and being unable to grasp new concepts. And to tell the truth, I didn't even know I had loss color perception and that my world had grayed. I can only tell you that I remember vividly, pun intended, the day the colors of the world came alive for me after proper treatment.
And finally, I had to quit work. I didn't know it then, but at that point so much damage was done, I would never be able to return to work. Despite being college educated and having spent years achieving a certain level in my chosen field, I no longer had the mental and physical abilities to be a member of any work environment. Do you have a purple pill for that?
But dear doctors, when it got so much worse than any of this, I think maybe I had just given up on all of you. I'd been in your offices for 25 years and my insurance companies and I had paid you so much money, but I just kept worsening. Honestly, I'll tell you now that in looking back, I see my cognitive abilities were in serious decline for a while. They do say that in this condition sometimes the first thing to go is one's own "critical self-analysis." I'm not sure which year it was exactly when I lost it. And I only now realize how flat my mood had become and why I never cried at anything. Not even my parents' funerals. Even my daughter's childhood was lost to me for a while, as was my own childhood. I guess when you're at the point where you can't even remember what happened yesterday (short-term memory loss), it just never occurs to you that it's not normal to not have much of a long-term memory.
I'm embarrassed to tell any of you that I suspect at times I might have been delusional. It was minor, but it was so unlike me. And of course it wasn't me. I became a person who could not cope with life anymore. I did not know that the voice in my head that kept saying "end it all" was a symptom called "suicidal ideation." I do remember that I looked in the mirror one time in the year before I was diagnosed and really didn't recognize my reflection. My hair was so coarse and dry, my eyebrows sparse, my color sallow. My body felt so bloated and uncomfortable. Clothes irritated my skin and I could wear certain shirts. I remember discussing eyelid surgery with my husband because my eyelids were so puffy and saggy. I looked and felt so old at 48. Naps were frequent during the day. I'd wash the clothes, and then I'd nap. I'd nap again, two and three and four times a day, dear doctors. At times, when I was laying on the couch a wave of sickness would just incapacitate me. I could not have moved if I had wanted too. I was dying and no one seemed to know it. And I didn't even bother telling any of you anymore, because I couldn't even make it to your office.
It might amuse you all to know that I actually got diagnosed when going to be evaluated for a low-temperature condition (Wilson's Syndrome) that, ironically, isn't even medically recognized. (Thank you to my husband, who jumped on that 96.4 temperature reading.) But thankfully, the doctor doing the evaluating knew the correct tests and correctly diagnosed me with the disease/condition that had robbed me of good health and joyful living. The day the office nurse called I just sat down at my dining room table and cried. And cried some more. Finally, after all these years, confirmation of what I suspected in my youth. Later on, I wrote some of you so you could put it in my record. Did you? I wonder because I never heard one "I'm sorry for how we have destroyed your life because we put all our trust in our lab test."
The answer?
