I blog gluten-free

Saturday, October 13, 2012

The Red Corset and the Baron

If something is wrong, it's being fixed--- whatever it is. If it's something that just feels odd, if I just have a heavy feeling in my gut, if it makes me feel sick... it's being investigated and changed until it's fixed. I'm not going to let it sit if I feel like it's getting too loud and crazy. I'll start compiling a network, and if it can't be fixed right now, all at once, then it gets worked on until it can be fixed. For example, malabsorption--- if things are being blocked from being able to be used by my body, then obviously, the culprit has to be found out. If whatever is not working, it must go.
So far, there's counselors, priests, friends, family. I've sat them down, I've worked to get them and myself educated so that if I am sick in front of them, they know and I know how to work things out. Because at one point, with the epilepsy, there was a little shame with the family, and that's never good... that helps no one, and that is freaky for the patient. After May's incident, in the car, after which, I found a nice bruise across my sternum from the seatbelt... (I realize, had I not been buckled in, going forward as I did, I would have fallen headfirst into the dashboard, so that's probably a good thing.)--- the shame really is no more---it's become, "What can we do?"

 I work every day on trying to toughen up, as eventually, I have to say it, "No, Dr., you aren't helping me, you're hurting me."
More work to do, but hey... Progress! :) And... vision's clearing up again... I was getting some rather wonky vision in one eye after the last round. (I'm used to being a bit weirdly-sighted, farsighted in one eye, very myopic in the other.) Now, let's hope this round of tests--- ugh, really--- points to something, I already have to change neuros, I don't want to go through the whole shebang, and this stress is getting to me.
---points to SOMETHING--- but among other things---and the list is being made as I need to memorize it and might as well ram it home: "Need visual and spatial tests. Check kidney. TRUST ME. It's THAT time of year again."

No excuses. These are medical staff who need to understand that I, a patient, need help. If they care at all, I will get help. They will understand that Shouty Doctor is absolutely inappropriate and that a patient in fear is not conductive to said patient. I cannot run from that. They are there to help patients, and took a vow to do so. I am not asking for the moon, stars, and Valium  I am asking for medications that do work, and to be able to eat like a normal human being, as being one of the 15% who experiences appetite loss on Topomax is not conductive to health, nor do I feel physically healthy now, especially having had the dose upped...after I said, "No, I can't eat normally on it." A well-behaved patient can be a dead patient.

I have things to do, and can't be wasting time wishing I could eat normally, or being a little sad that everyone is running circles 'round me. Nope. Time to dust off the boots and head into the woods, down to the creek... off where ever my heart desires.
Or perhaps the The Mütter Museum to see the Soap Lady.

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