Sep 012013

Tecfidera has been playing pretty nice with my body the past several weeks. I think I already mentioned that somewhere. But there is one thing about this pretty teal pill that I am having an issue with. It’s not really an issue so much…just weird. You see, these pills are noisy. Yes, noisy. They sound like a baby rattle. No biggie except that I can hear the noise even after I swallow them…as the pill moves down my esophagus and into my belly I can here it rattling. Weird.

Boy, the beast been doing a number on me these past few days. Wobbly legs….like jello…and weakness. I have had this many times before. What’s new to me is the overwhelming weakness in my arms and hands. Especially the left side. I’m having a hard time lifting my upper arm. I can bend at the elbow but can’t pick anything up…that’s a total fail. The upper arm is stuck to the side of my body as if its been super glued there by some really obnoxious prankster. The right arm too, but not as severe. Earlier today I was thirsty but couldn’t open the bottle of water. Sucks.

Somehow, some way I have to find the middle way… The middle of the road between work and pleasure. I love my work but I don’t want to miss out on the good stuff because I’m beat to hell. Surely there is a way to do this. There must be.

There. Must. Be.

keep calm carry ohm

Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  3 Responses to “The Middle Way”

  1. OMG>>>OMG>>>OMG!
    I said the EXACT same thing about the pill. That I had a HUGE problem with something that was rattling on, even after I swallowed it! One night, I even made Shawn keep his ear up to my tummy while I hopped up and down because I SWORE it was STILL jiggling and wiggling!!!!! Sometimes if we are going to be out and about, and I know that it will be pill time, I throw what meds I need in the coin pocket of my wallet. WELL that is just FINE for most, but NOT (as I learned) for the Tecfidera. Twice now, I have reached in to get the beloved teal tinkling beauty out, only to find that the capsule and erupted and there are tiny little white pellets all over the bottom of the pocket (it’s like a tiny mini little bunny rabbit left white little turds for me.)
    I actually had a meet and greet with the two Biogen representatives here in the Seattle area to talk about becoming a Patient Advocate for the company. (Between Tecfidera and Ampyra, I figure I could be their poster “child”! There were two woman there at lunch that already do this (both having done a training session that lasts a few days and is about speaking to an audience etc.) It was great to hear about what they do, and what it is like. Hoping that I can start doing that shortly, there IS a training seminar in late October (in Boston) but they are not sure whether they can get my “paperwork” processed ,or whatever is needed, in time. BUT the reason that I even bring this up, other than the fact that I am SUPER excited about it and wanted to share with SOMEONE….is that during the lunch I did bring up the “Noisy PILL!” I asked WHY it had to be like that and was there a way to change it….seems to me the solution is fairly simple, just put all those little white turds in a SMALLER capsule, so they fit snugly rather that wiggling and jiggling. They actually seemed kinda interested in this feedback and said that they would mention it to whom ever would be in control of the wiggling and jiggling. WHO KNOWS….maybe they WILL change it!!!!:)

  2. I think that maybe some rest might help. When I get really weak and wobbly, the only thing that sets me right is a lot of rest. I know you have work, but maybe a day of doing nothing may be the answer for you.

  3. Hiss and spit. I have found that the middle way is a bit of a moveable feast. The place I find it today is inaccessible tomorrow. Keep trying – the choice between a life and an existence makes the effort soooo worth while.

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