Monday, November 05, 2018



In the middle of the night last night, I started melting down.  I have such a physical reaction to when I become so overwhelmingly sad.  And I do not know why.  I was sorrowing and despairing and longing to hear the Word of God with such a visceral desire.  I wanted both to have it in my ears and to have its calm.

It still amazes me how, if you read the Word of God to me when I am grossly upset, my heart rate will drop, my blood pressure will decrease, my shaking and trembling will subside.  The Book of Concord teaches about the comfort of the sweet, sweet Gospel, comfort as in a verb, not merely a noun.  That is because the Word of God is powerful and performative.  It is sufficient.  And it is perfect.

Wondering about last night made for a weird day for me.  But it was also par for the course.  By that I mean, I got up, took Amos outside, walked on the treadmill, cooled down, showered, napped, fed Amos, fed myself, worked on a puzzle, napped again, struggled to concentrate the rest of the evening.  I did get to speak with Becky, which always brightens my day.


I fell asleep working on that and never got back to it.  I frankly do not remember what I was going to write.  But I melted down around 5:00 this morning again.  I just do not understand what is happening to me.

Right now, I am waiting on my GP.  Normally, she is approximately an hour behind.  That is because she takes her time with all of her patients, all of her patients being complex.  I do not mind waiting, although I wish I could just come at a later time.  In all my appointments, my appointment has been on time only once.  It was a miracle that day!

I am a bit discouraged today, not really hopeful at all.  That is kind of odd, since the duloxetine is clearly helping the baclofen work better.  For many patients, it helps either or both gabapentin and baclofen work better.  For me, the baclofen is more efficient.  I have not had a flare of occipital neuralgia since I went to 60 mg.  My lighter flares of pudendal neuralgia have almost disappeared as well.  Although the larger flares are still brutal.  And the spasticity in my legs has finally eased significantly after over two decades!  I can actually bend over and touch the floor!!  Another miracle.

So, in some way, things are better.
But my hands are not.
And the constant nausea is still plaguing me.

For a while now, I because nauseated after I eat.  Eating sometimes make the nausea better.  But then, afterwards, it can be rough.  And I still get the wild bouts of violent waves of nausea.  I would like for just one day to be free of nausea.  Just one day.

And the pre-syncope (near fainting) has been just awful in the evenings.  Of course, the past two nights were back to a more mild episode.  But before those ... whew ... I just struggle to get up at all.  I do not know why that has changed for me, except for the fact that dysautonomia is a mercurial condition.

Episodes.  That's what folk call fainting and near-fainting.  I actually do not like the word, but it seems to be practically industry-standard.  I think that the word is used because of the collection of symptoms/responses that your body has at such times.  But, to me, because of television, I think of the word "episode" as belonging in media, episodic media.

If you Google the word, this comes up as a definition:  an event or a group of events occurring as part of a larger sequence; an incident or period considered in isolation.  To me, neither of those fit for a faint or a near-faint.  So, the word nerd in me wonders how "episode" became the favored moniker.

Too, I dislike the word because I feel as if it diminishes the enormity of what is happening.  By that I mean, fainting and near-fainting might be commonplace in our world, but they are a terrific strain on the body, especially near-fainting.  Growing dizzy, shaky, tremulous, weak, nauseated, disorientated, and anxious overwhelms the mind and body. Once the near-fainting has eased, you are still weak and overwhelmed and, for me, a bit discombobulated.

I talk about how, after a migraine, I am a bit shell-shocked over the absence of pain.  It is hard to wrap my mind around the fact that the migraine has ended, that the colossal battle with my body is over.


I've spent the evening roasting myself before a fire.  My temperature at the GP's was 96.2.  Temperature dysregulation is not something that seems too much to handle, but it is a strain to never know how your body is going to respond to cold or heat or how your temperature will be on any given day.

The totally weird thing is that I have had waves of chills traveling up and down my body, with icy skin making the cold spell truly miserable.  And yet, at the same time, my face and ears have been burning all night.  I just brushed my teeth in order to start the fluoride tray treatment and was amazed at just how red my face and ears are.  They are on fire!  So, a small part of me is burning up whilst the rest of me is freezing!

It's nuts, living in this body of mine!

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