What does this even mean, “not the other 99”? I am screaming this at the top of my lungs. It is my user name and the title of my first blog.
But what does it MEAN? If you are like me, and have been searching for that mystery medical diagnosis for ever-changing and often disabling symptoms, you may be following me on this. If not, read on.
For years, over decades, through migraines from the head to fractured bones in a toe and everything in between, I hear doctors tell me over and over again, “if you were a man, if you were older, if you were younger, if you had no kids, because you have kids, if you exercise more, rest more, lose weight, gain weight, were taller, shorter, have more hair, have less”, etc, etc ad nauseam “then I would think this, test for that and do the other thing. But everything is normal. You are normal, we can’t find anything wrong”.
However, slowly over time, “things…abnormal things” ARE found (more on each and all of those in later blogs, I don’t want to scare you away so soon), but answers are not. For almost thirty years, I am still not being heard.
Two weeks ago, I was meeting with my hematologist for the 4th or 5th time (I’ve lost count as my memory is nowhere near what it once was) and we were discussing my continuously decreasing iron STORES, not anemia, which had gone up in November after an infusion, and subsequent rare reaction, but have continued to drop since. More on that again in a later blog. But while the numbers are dropping and I’m still terribly fatigued, among other things, my serum ferritin is still within normal limits, so “it is not my blood” causing whatever is going on. Excuse me? It was in November, but now it is not?
My doctor started to go on to explain during our friendly, but back and forth, discussion that “I could have 100 patients like you, and in 99 of them…” I did not let him finish. My frustration boiled over and tears poured from my eyes as I loudly and confidently blurted out…”But I am NOT the other 99, I am ONE…and I need a doctor who will start treating me as ONE, not 99″!
He heard me. Loud and clear. I have a follow-up next week and we will continue to try to figure all this out. It will take chapters for me to list all of the ailments and tests and experiences I have had over the last three decades, and I will when I can muster up another small normalcy in energy.
But for now, the important thing I want to leave for you here if you’re just beginning your medical journey or have been fumbling through for years, is to be sure to let YOUR physicians know that neither are YOU the other 99.
As always, best of luck and safe travels along your medical journey,
NotTheOther99
nottheother99 