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Why Does It Have To Be This Way?

on 13 December, 2013

So, today, I made the trek – yet again – down to local university medical center to try and come up with a new primary care doc. A little history.

Oh God, where to start. Early fifties and I have spent the better part of my life trying to feel normal. ALL of my adult life. In my early 20’s, I contracted bacterial meningitis and although I recovered, I believe that was the cause of the start of the chronic headaches. And the chronic search to feel normal again.

I’ve done it all. And when I say all, I mean ALL. It started with pain medication but it was so heavy and debilitating that I didn’t feel any pain… like the day I hit my cheek on a filling cabinet and didn’t even flinch. It did leave a gash, swelling and a black eye. Then we went to lower dosages and combinations, but I never liked the grogginess that I felt. Someone suggested yoga. Biofeedback. Relaxation therapies. Massages. Screaming therapy (that one was weird) but I was willing to try anything to feel “normal” again. Most of the time it was just aspirin or dark room and silence. And sleep. Or

Then a few years later, I wrenched my knee. The one I wrecked in high school stepping off a skateboard doing about 30mph (they say). The doctor recommended ibuprofen 800Mg. That worked for the knee and the swelling, and interestingly enough, it worked to some level on the headaches. At least enough to still be able to function. But eight or ten years of that and I was up to 30 or 40 pills a day. Let me do the math for you: that’s 24000 or 32000 Miligrams per DAY. OR MORE.  Let me be more precise: those are numbers in the THOUSANDS! Over the course of years. My new doctor became very worried about my liver. He sent me to a pain management specialist.

Long story short, over the course of six months or so, we finally hit on the right combination. Relief from the constant headaches without that ‘doped up’ feeling. You cannot imagine what it was like for the first time in a quarter century to not be constantly struggling with headache pain. I remember the follow up appointment with my neurologist… I hugged him and cried. I felt normal for the first time in my adult life.

I celebrated that. Embraced it. Lived it for all it was worth. But most of all, was careful that NOTHING changed that. I felt it was damned near divine intervention that different medications from different docs for different diagnoses was the magic that made it happen. For the first time in a long time, I was just living life like everyone else.

Then the inevitable happened, my primary care doc – the hub of this medical wheel (I’ll call him Dr. David), decided to head west to set up a practice for an under-served section of Kansas. How can you be mad at someone doing such a noble thing? But I was disappointed and was hurt to see him leave, but mostly worried about how it was going to impact me. I know, that is selfish, but I think I was justified, it was a tenuous balancing act with all my docs and the pivot-able person was stepping out from under this human pyramid.

And my concerns weren’t unfounded. Yesterday marked the second attempt to find a doctor who will find Dr. David’s shoes. But he was much the same as the first attempt, both docs believing that they know better what would work for me. Both insist that I go back to point A, where I started this journey 25-ish years ago. I think they both are young doctors and unsure about what they should do. Unable to trust what someone else has seen and recommended and chosen as the path that makes sense to them but not to these inexperienced doctors. Falling back to their all too recent training and textbooks, unable to see that as the patient, inevitably, I know what is has worked and has not worked. And what is best for me.

Not to mention the sheer amount of time and energy and money. Each time I have to see a doctor, there’s inevitably a wait. And with getting there and home, the amount of time lost from work is at least two, two and a half hours. From a job which I am finally feeling like I am finding my footing. But too much time away isn’t good. And I am expected to invest EVEN MORE TIME into retracing, recreating and retrying the methodologies that I have already tried. Some twice. Some more than that. And then all the time NOT feeling normal. NOT having the relief from the headaches that has been my bane since my early twenties.

It has been said that doctors are narcissistic. Self centered. Self important. I’ve seen, met, known many medical experts in the past twenty some years. Most that I have encountered haven’t been that way. Most have been good people. Helpful people. Truly interested in helping.

But I have recently met some that haven’t fallen into that camp. Maybe because they are still students/residents. The doctor I spoke to yesterday said “I/my/me” many more times than he made reference to me, the patient. Truth be known, so did the one two months ago in October. Since when is seeing a doctor about the doctor? Isn’t it supposed to be about the patient?

Okay, so down off the soapbox for now. I have a new direction, a recommendation for a doctor outside the educational institution of medicine, a doctor with more life experience. More medical experience. But after spending two years carefully crafting a circle of care under the umbrella of Medical Center, I realize the error of trying to be so carefully organization. From this point on, it is about finding the best care and the best doctors regardless of where they practice.

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