Every Day is a step in the Journey

This morning I read what someone was thinking and feeling about having a seizure disorder (which seems to be easier to say than having epilepsy… which I can totally understand… It is totally a head thing and I know it is, but I have lived through epilepsy being a kind of a totally scary word and seizure disorder doesn’t feel so scary).

The comments that appeared in association with the feelings, I think, made the writer realize that as bad as it gets, it could get worse.  One person commented that they held the head of their friend while they seized for twenty minutes and that they were still seizing as the ambulance drove away.  That is scary.

People have so many different situations (first thought for that sentence is problems… but they are only problems as long as you view them as problems… after that… they are situations).  The situation in the conversation revolved around meds.

As a person who has been dinking around trying to get the mix of pain meds (anti-inflammatory) and disease fighting meds to try to beat all of this down into submission, I can so relate.  Watching my kid deal with more and more and more meds every time she has a seizure, I can totally relate.

I have heard three different doctors (the on call doctors who return my call every time we have a seizure) say… if we just up the dosage to <insert new number> we should be able to control it.  We have gone from 500 mg of Keppra to 1750 mg in four months.  I remember them telling me, when we were in the process of being transferred to Dell Children’s Hospital that they were giving her 3 times the normal dose but only to keep her from seizing a third time in as many hours… that three times dose was 1500 mg… wow… hmmm… I’m starting to wonder if the nose bleeds and rapid changes in mood (zero to bitch in less than 10 seconds at times) is really worth the adventure that we are having…

Every day, though, is a step in the journey… a day further towards what we have to get to… to what we don’t know..

The comment resonates…

“Wtf is with stupid ass doctors perscribing meds that obviously dont work & adding more of the same kind of medication your already on is suppose wake your body up and say hey dumbass this will help seize the problem…but it never does.”

I want something to help seize our problem… eventually I hope something will…

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