Saturday, July 27, 2019


Prayers are answered. Yesterday I learned from the neuromuscular experts at UW that I no longer need to be concerned about neuromuscular disease.  What a relief!  This includes LEMS, and it means that I can come off the firdapse immediately.  That's one less medicine (HOORAY) and one less avenue of diagnosis.  Whether it was an entire year of high dose IVIG that did it,  who knows?!  I'm grateful. Thank you God.

The Doctor identified something wonky with my eyes yesterday,  so I have to follow up on that.... but that's small compared to the other issues that have been on the table.

Although I still have other health stuff to deal with, including a still undiagnosed inflammatory something, I'm beginning to see things heading in a new direction of healing.  Im having much less breakthrough pain and im able to move around more without crashing.  That said,  my pace is slow.  I get very tired very easily.   The nausea and body pain are my reminders when ive done a little too much.   If I really over do it, then it's usually an attack of some kind... so I will keep everything "country slow" as I make the adjustments that my doctors ask of me.  My stress level will remain as low as possible, therefore no school for now. Painting, mothering, spending time with my animals, REHAB with Harvey... this is my life as I heal.  Slow and very steady. 

As I surrender to God. Not my will but thine.

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