Today’s lesson is one on fragility. 

I have been reminded how fragile my health is. How strong Ly
me is. How much I need every person who has helped my family and me. And oddly, how little food matters to me now.

I sort of consider myself a foodie. But in the last two weeks I’ve been so unable to eat much, keep it down, or bother with the energy it takes to deal with it, I find it odd that for a while I was actually dreaming of pizza and milkshakes. I haven’t had either in years now, probably.

Story goes like this: started the new meds (Doxycycline IV, Cefepime IV, and kept on Rifampin IV) on a Monday. By Thursday night I felt ill, tummy hurt. From then on, I was in pain and sick constantly and in the ER a couple of times for what could have been a clot in my PICC line, but turns out to be simply inflammation pain in my chest, and die-off of the Lyme. So the meds are working! A little too well, it seems. OR at least, too quickly for my body to detox from and metabolize everything. So today is the first day I’ve been able to think enough to blog since then. And I hardly remember most of the last two weeks …but then I slept through a great deal of it, and probably blocked out a bunch of the rest.

My new plan is hatching: I will run the IV meds one day, and just saline the next, in hopes that I keep food in me, so I can absorb the meds, and let them work, and detox, and do it all over again.

Perhaps it is needless to say that my Lyme specialist has become invaluable to me in a whole new way. Calling her let me skip another trip to the ER (where they never do know what to do with me, and find nothing wrong), and clued me in that this is not a reaction, a flu bug, or a clot, it is die-off. Scuzzy bacteria in me. How special. And so I’ve decided to keep seeing her, at her new location, and hope to go in October. So, praying the fundraiser my Dad is tenaciously pursuing will make it possible to keep seeing her. And maybe, just maybe, I will start to see life beyond the bacteria-brain. Maybe have health that is better, not awful, or merely stable again.

So grateful for support, gifts, meals, time –my husband, care team, and my mother. I felt like dying a few times there, but they kept life going in our home, and in me when I couldn’t. Fundraiser website will be live soon, and I’ll post about it!

Words to live today: Be brave enough to admit how fragile you are. Allow yourself to be carried, and then keep moving.


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