Friday, February 19, 2016


What did you do today?

Held Amos.

No, really.  What did you do today?

I held Amos.

Yes, that is what I did.  When I tried to shift him out of my arms, Amos protested.  After a few times of that, I gave up.  Really, I didn't try all that hard because of the crashing waves of violent nausea tossing me about most of the day.  You would think, with several years of practice, I would be better at handling the nausea, but it just catches me off guard.

I had thought I might go back to Target, now that I have a gift card, for the three things that were on my list but I somehow forgot even though I was checking my list whilst fetching prescriptions on Wednesday.  One of the times, conditioner, is very much needed.  Only standing leaves me dizzy and I just don't concentrate much when I am nauseous.  Basically, I let Amos' preference rule the day because it was my preference, too.

I did find a video on Facebook that I thought was rather helpful.  A young woman was filming and her blood pressure drops.  It provides an opportunity to see what pre-syncope looks like.  Syncope is the medical term for fainting.  Pre-syncope is what most folk term near-fainting.  It is wretched.  Both syncope and pre-syncope from dropping blood pressure can come on suddenly, especially with someone with Dysautonomia.  Watching it was hard for me, but also very much welcome.  She knows!  I am not alone in this wretchedness!

In my head, I know that millions of people have one or more forms of dysautonomia, but millions is so far from my small world.

I also added a few more dates to this (temporarily) free app that I found:  Days Left Widget.   It is a simple way to count down to a date or count from a date. For example, just 470 days remain until I can get the shingles vaccine (I had full-blown chicken pox twice as a child and live in fear of shingles). In 154 days, I will have finished paying off the sewage repair bill. And I have just 20 more days of freedom until my next torture session (interrogation) at the pacemaker clinic.

Today marks 216 days since I weaned myself off Xanax and moved to coping with the symptom of anxiety holistically (an achievement I am most proud of). It has been 51 days since I last resorted to my poorest coping mechanism that I am working on setting aside. And ... well ... I am trying to decide the date for my last meltdown.

I would put it at 37 days, at the integrative medicine specialist visit (I only just managed to finally talk about it in counseling yesterday, but only as I was literally walking out the door—such a bad experience it was for me). However, I did scream at the Medicare company supervisor who called me and my GP's nurse liars last week and then ended up phoning Mary weeping because I was so defeated over my screaming; I did not calm down until she started reading to me from the book of John. I don't know if I would term that as a meltdown or just inordinate upsettedness. Still, maybe the latter is just 8 days.

Also, it has been 158 days since I met this confusing and interesting counselor who believes that there is healing for everyone, even folk named Myrtle.  Maybe I should figure out the date that I started reading the book on shame.  Already I know that it is important!

I did hint on Facebook it would be dandy to add a date for when I might have a visitor.

Wait, I just thought of another date to add:  The day I met Amos!  It's been 1,832 days that I've had my beloved Fluffernutter in my life!

Yes, I clearly like the app.

I think it is a fun app to have, but I also think that it might be a bit more important to me since time is so fluid between my broken rememberer and days and days and days of nausea or writing or dizziness.  What day is this?  What month?  Has it really been five years plus since I moved here.  There's a date.  It's been 1,885 says since I was felled by food poisoning and the malfunction in my innards was triggered.

1,832 days since the pit bull attack.  SIGH.

Perspective, though.  It's only been 88 days since I got Georgie.  No wonder I am still struggling with living with a pacemaker.  My pacemaker.  Interrogations.  Nightly testing.  The accelerometer.  The hypertrophic scarring.  The pain.  The pain.  The pain.

Days where life has shaped me.
Days where I am trying to shape life.

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