Saturday, March 16, 2013

The Plan


Ok really bad pain day. :meep:  In addition to our usual feet in a vice, we also have burning toes for extra fun.
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BUT you are looking at the newest volunteer in the Tetrodotoxin post-chemo neuropathy dosage trial.
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Btw… that comes with a buttload of paperwork.. seriously diaries
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The Orange is my Pain Medication Diary which will largely remain empty since I don’t really take any.  I mean for the next week my topa max will get recorded, but once I’m done with that, there won’t be anything else.
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The Green is for Non-Pain Meds (basically will end up recording nyquil nights)
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And the Blue is symptoms… date started, time started, ongoing yes or no etc.
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This binder also has all the consent paperwork (dude it’s a chunk), plus the schedule form, the call-in page with my subject ID and pin # for when I start calling in with my pain scores (starting on the 25th of March.
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I start weaning off the Topamax today (THANK GOD) and he said I should start getting back some of my mental acuity as I get away from it.  Halleluia.  I start calling in my pain scores on the 25th, and my treatment week is the 9th of April.  It means missing school the rest of that week.  So after break I will be going to the disabilities office so they can help me navigate it with my profs.
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The good news is that for the people who have had success with this, the effects can last for up to a month, in some cases- up to 60 days.  Pain free for up to SIXTY DAYS.  Like… just the thought of that made me tear up.  
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After the trial  there is a plan in place evidently to keep participants connected with the drug as a prescription and provide them with tools to be able to administer it at home as needed as well if it is successful for them.  Details to follow post study.
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I’m trying not to get my hopes up.  But honestly, even if it DOESN’T work, at least I feel like we’re DOING something now to try and find a solution.
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So that’s the plan for now..

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