Depth of Knowing

The doctor took one look at the baby and said “She doesn’t look sick” but I knew she had an ear infection. In fact, upon examination he couldn’t believe how badly both ears were infected yet she seemed fine, if you didn’t know her.

Just as I knew that–after visiting my PCP for months claiming– something wasn’t right, to the point where, on my last visit with him I stated–as noted in my chart-“Patient feels as though there is a tumor growing in her body, reassured her.”  Well no, he didn’t, in fact he tried redirecting me to psych. I went back again– after I found the tumor. Maybe if I had taken his word for it, as did my mom by accepting her doctor’s reassurance, I would have suffered the same fate.

It seemed like my children were always sick, understandably considering they went to different schools and an after-school program, therefore were exposed to everything. While undergoing chemo I had to take extra precautions so I decided I wanted to find a really good children’s multivitamin. At one of their annual physicals, maybe six years later, I inquired when our last “sick” visit was. The doctor stared at the chart for a while, then told me the date and said that whatever we were doing, keep doing it.

I knew something else was wrong. More cancer and many months of doctors trying to reassure me until one finally had the sense to biopsy. This was the big one. The kind that often goes undiagnosed for years, not months, so I was very lucky and my persistence paid off.

One of my surgeries didn’t take well and I had a big gaping hole in my body. The skin around it kept turning black and I had to visit the surgeon often to remove all the dead skin. It was scary and utterly disgusting so I’ll spare you from the gory stuff. After weeks of this he informed me that we would have to schedule a surgery to try and repair. He gave me one more week to come back, so he could assess and decided his surgical approach. I left and decided to take matters in my own hands and when I came back a week later, he couldn’t believe his eyes as he ran to get a camera. While not completely unheard of, yet extremely rare, I was growing new skin from the black dead skin. He asked what I was doing and when I told him, he just said, “Well whatever that is, keep it up”.

For seven years I knew something was wrong with my thyroid yet my blood tests were always in the normal range.  I even said that maybe my normal is different from what they consider normal. Finally a doctor heard me and ordered a test I never heard of. Normal is 0-20 and I came in at 2,795. I was dx with Hashimotos, an autoimmune disease of the thyroid. I asked what this means and was told that while I measure in the normal range for standard thyroid hormone levels , my normal is different and we should focus on getting it close to zero.

While I could cite many more examples of my just knowing things, this is not about right or wrong. I don’t know everything but when I do know, I just know. It’s a depth of knowing that I can’t put into words and a feeling that just nags until I act on it.

Well I have this feeling now. What I spent years piecing together makes sense so how can I get someone in the position to help–to take me seriously?

Do we really want to gamble with the fate of so many lives? Does anyone want to bet on me?