Swallow

I am sitting in my kitchen. On my stool that helps so I don't have to stand at the sink or stove. There is a glass of tea beside me- room temp, not cold or "iced'. Mostly eaten lunch. I am just staring at this half of a pill. 

In my head it is the obnoxious Yogi in me. Trying to be mindful. Trying to define my intention. Making sure that taking this pill is what serves me best in this moment.

My inner debate:

Part 1: I want this pill to work. I want to feel better. It will give you a clear idea what is going on. 

vs

Part 2: If this pill works, new diagnosis. New stupid label. More doctors. More tests. It could cause diarrhea. 

The pill is Pyridostigm. 1/2 of a 60mg. It is used to treat Myasthenia Gravis. From the list in the Limbo post. The fatigue, muscle fatigue, weird eye issues. And the fatigue has been BAD... having days where I am not able to even get around my house except to use the bathroom or get some pre-made food. Days when I don't let myself drive- there is no focus and my foot couldn't press the gas properly let alone the brake. I'm using Alice more. Even taking her to work. I have been gearing all my energy around maintaining my ability to work. Barely been social. Eyes have been very out of wack- more double vision, eye fatigue and pain. But then weird days when I am fine. Which makes me feel like a crazy lunatic... dragging my left leg around and then one morning it is fine. Why couldn't I lift it yesterday, but I can today? Balance has been all over the place. And the fatigue. Ugh, being tired is so tiresome! 

Had a weekend where I missed things. I stayed on the couch. I didn't move except to eat, bathroom or let the dogs eat or go to the bathroom. I missed a birthday party and a baby shower. I knew it was not in my head. Resting wasn't even helping. And this was not the first weekend that had happened.

Was a bit of a smack upside the head. Was a reality that I cannot keep going like this. Something had to change. Something new. I've been good with my diet. Getting MORE than enough rest. I had already tried upping my dose of lyrica. That helped to an extent- back to a more normal sleep pattern & chilled out the "background noise" pain. But I was still functioning on an "only what is necessary" level.  Last neuro visit we had discussed medication for MG. I was hesitant to try medicating for something as an attempt to diagnose it. And I was less symptomatic then. So I went back. We chatted. We discussed how if I do not have MG that the medication won't cause wackiness. Short trail to see, and we'll book tests in the mean time. CT of my chest to check for a tumor or enlarged thymus and an EMG. (Side note, I like my neuro now. Found she is a lot more attentive and engaging if there are not residents in the room... which is fine, I know the residents need to learn, but I need my doc's focus).

I do not want Myasthenia Gravis. Most of the literature goes like "autoimmune disease effects muscular-neural junction. often well controlled on medication. can be deadly if muscles of respiratory system are effected" I read the literature and I am familiar with many of the symptoms. I do not want my current fatigue and assorted issues to be Myasthenia Gravis. But I don't want them to be something else. "often well controlled on medication" that isn't so bad is it?

I am trying to let go of an outcome. There is no good outcome. If it isn't MG, then what is it. Is it something worse? Some other neuro-muscular disorder that perhaps has a treatment. Or "just EDS" acting up and I am going to be one of "those" EDS people that is stuck with no treatment options. 

I am staring at this pill. I want to feel better. I ask it not to give me diarrhea. I warn my intestines that something is coming and remind them I took a pro-biotic earlier to help them out.

I wait.

there will be waiting. starting 1/2 pill 3x/day (2 today) for a few days then up to a full pill 3x/day... wait... wait... wait... could help today... could help in a week... could do nothing...

More on MG... http://www.myasthenia.org