and it kicks you when you're down

I need to post some informative stuff, like my first couple of entries about euthanasia and spinal cord injury. Something useful will surely make its way back to the pages of my blog someday soon. This is not that day, however.

I saw my internist today, told him I have really been feeling bad. He brushed that off with the usual, "You're looking good though," comment. I mentioned my desparate insomnia. "I don't just throw sleeping pills around, you know." <--- wtf?! The man has known me for four years. I have never been anything but honest and compliant. Now he acts like I am simultaneously stupid and drug-seeking. Thanks a lot Doc.

We've known for a little over a month now that my lumbar shunt is totally non-functional. The discussion about what to do next has been ongoing with my neurosurgeon. I am on Diamox, even though it's never helped in the past. Surgery can be scheduled at convenience because my eyes look fine.

Or rather my eyes DID look fine. No more. After he finished blowing me off, internist decided, ah why not have a look through the old ophthalmoscope. Usually this is ho-hum for me; I stare into the distance while the scope clicks and the doctor says everything looks fine... Which is pretty much what happened today, except for that last part. This time it was all drama as the internist announced frank papilledema OU. (swelling of the optic nerves- both eyes)

"It does not look good in there at all." <---- phrases like this, repeated many times. "You need to get that shunt fixed, ASAP. You've gotta get out to Chicago!" More drama as a plan of action is formulated. I'm sent downstairs to the retinal specialist whose exam discloses a "possible left afferent pupillary defect" and, you guessed it, nasty-looking papilledema in both eyes. There is talk of the ER for a spinal tap. Finally I am allowed to drive home after promising repeatedly that I will call internist first thing in the morning and show up @ hospital for a spinal tap at some point tomorrow.

My thoughts throughout this whole thing can basically be summed up in one word: Shit. ...This is the last thing I needed right now. All of this just confirms for me what I told my PCP at school- No matter how bad you think it is, it can always get worse. I said that in reference to pain. But it rings true for general illness as well.

One thing I wondered about today was my internist. He seemed thrilled in a way to be playing the gallant discoverer of something terrible. It was as though he enjoyed the drama, for it was a "good catch" on his part, and an emergent problem that he could volley to a trusted colleague-- All the while displaying his deep concern like a war medal.

The above thoughts may not be fair. I like my internist a lot, he's a great person. He does have true concern for his patients, and always good intentions. His integrity is obvious. So why can't he actually listen to me for once? I am willing to trust him, but he has to accept my trust. And what about trusting me, after all this time? Why does he so frequently blow me off? I can't help but think that maybe (just maybe) the visible papilledema will give some clue that I am truly in pain when I say I am, even though it can't be seen.

The invisible pain thing could start another rant entirely. My father refers to me as a "stoic". Even as a young child, I rarely cried. When I was two, I smashed my hand in the hinge of a very heavy wooden door. I bled heavily, and stitches were necessary. Throughout the injury and its treatment (so the story goes), I did not cry. Why, having lived daily with pain for so long, would I act any differently now than I did then? Why is my word not enough?

This turned into a total ramble. I was going to find a fundus photo to illustrate papilledema, but I am too tired and achey at the moment to do so.

Sorry for the incoherence. I'm pretty bummed.


Blogger Dreaming again said...

"but you look fine" is the bane of all chronically ill! ARGH!!!!

I've gotten it, even from my favorite docs. I think the one that floored me the most saying it was my pulmonologist ... who's mother had myasthenia gravis ...um, hello Dr. G, you should know by now, having lived your whole life with this disease looks mean nothing!

You would think that after all doctor's go through in medical school, residency & training, that they would know looks isn't what is the basis for diagnosis or treatment!

I hope by now you're feeling better and you've gotten the spinal tap to relieve the pressure & they get the shunt fixed quickly. VERY quickly!

You're in my thoughts and prayers!

1:59 PM  
Anonymous Anonymous said...

man - i'm sorry for your experience described here. you are learning multiple sides of medicine simultaneously, i dont know how you do it. thanks for sharing you experiences about the internist, really it offers me some reason for introspection.

take care of you, and please keep your spirits up if you can... you've come through worse i'm sure.

10:44 PM  

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