I’m my own damn sunshine

 

Two thoughts: I love a monochromatic moment. And I need to bring my ring light up from the basement  

Yesterday we saw the Barbie movie. I bought this dress and cardigan at Walmart while I was processing my feelings afterwards. Everyone says that they cry at America Ferrara‘s speech, but I held out for Rhea Perlman at the end.

Movie review: lovely to look at but beats you over the head with the themes. 

Anyhoo, let’s do a health vs work update, as I need to see about getting packed today.

STORYTIME

I’ve been diagnosed with dysautonomia for a bit now. It literally means my autonomic nervous system doesn’t work properly. It is a neurological condition that may be autoimmune, but is most often discovered through cardiac expression such as postural orthostatic tachycardia syndrome.

Liver disease, Lipidema… pick a body part, and there’s probably something wrong with it.  

I already had celiac, but now I have diabetes and coronary artery disease - getting a stent next month - so you can imagine that my diet is just delightful these days.

I am currently in the process to find out if I officially have Ehlers-Danlos syndrome and/or Chiari malformation.

This may come as a shock to people who knew me way back when, but I have actually had an extended period of being bedbound and now use mobility devices, depending on how any particular day is going. 

On any given day, if I am going anywhere bigger than a Walgreens, I am using a rolling walker with a seat and anything larger than a grocery store is going to require my power wheelchair.

You can imagine that this has had an impact on my employability. 

Now my employment consists of working a few hours a week at my church and doing event planning, on my own schedule, for music education retreats. 

I have a virtual assistant who lives in South Carolina, who does 90% of the event work for me. I am the conductor and she is the violin. This provides me with a bit of a safety net when I am not feeling well, because as we go, she is learning how my decision making process works and how to respond to things independently.  In theory, even if I were to get very ill for an extended period, she would be able to keep things afloat and even bring them to a graceful end. 

Music retreat is happening this coming Sunday through Thursday so I need to get packed for that.  I’m now a solo disabled traveler. That’s funny… that packing used to be about picking outfits and now it’s about predicting which mobility aid will be the most useful in the planned environment. 

I’m grateful that I’ve been able to set things up to be able to do this, though. Not working at all is soul sucking. I’ll hang on to this for as long as I can.