Help arrives in grace…
My body tense, a sense of cool dampness throughout. The little space heater next to me which I have lovingly named R2-D2, twists back and forth on its axis giving me a wave of wind to whisk away the sweat and break the cold.
This tension and spasticity, coolness and sweat kept waking me up last night. Of all the lovely irony, my mind was somehow peaceful, but the body instead took its turn as agitator.
As the early morning dawned, I lay still but uncomfortable. I thought about those few chocolate covered coffee beans I enjoyed yesterday, and the fig I ate with cheese as a little dessert after dinner. Had I overlooked some sensitivity and inadvertently fed a growing urinary tract infection with those sweet sugars?
Funny thing about urinary tract infections – in my condition, when I get symptoms, it’s already pretty uncomfortable and the standard protocol is to capture some fresh urine, deliver it to the medical research laboratory (having procured authorization and orders from urologist), wait 24 hours to determine the likelihood of pathogen, and an additional three days for those to be grown and identified, all of which takes time and the early bits generally more time than expected.
This means that between detection of symptoms and the onset of treatment, easily 48 hours have passed, and possibly more. In this window of time, symptoms can go from distracting my daily work to downright bedridden.
So I self manage. The urologist hates this, but fortunately I have primary care in touch with more immediate compassion and support. Not to demonize my urologist, whom I adore, but just to say he’s a little well wedded to the aversion of too easily putting someone on antibiotics which is also an important polarity to manage in this wider process.
So I’ve proactively and preemptively popped a little pill today (wide spectrum antibiotic) and will continue to do so for the next five days in assumption of the infection as the source of my discomfort. In the meantime, it’s also possible that UTIs not the issue. It might be some aspect of the barometric pressure or other aspect of the weather as we seem to be dancing between rain clouds for now. It could also be something more sinister and akin to our recent hospitalization for a bowel obstruction.
For now, antibiotics. Next week, MRI.
So on top of short staff, technical delays with website support, full schedule preventing the finalization of the crowdfunding initiative just yet, to say nothing of looming financial tension and housing and long-term care concerns, the health is failing again…
Of course the telemedicine appointment with the doctor following up on my recent hospitalization is now 35 minutes overdue with me, not quite waiting for his call, but moving on to the rest of a very full afternoon.
I have some friends, Lisa, Daniel, Elisa, Ahlea, who have stepped up in this window to practice learning care and support as the familiar context of our lives continues to crumble. The good spirit and that is of course good news, but Ahlea really gets the prize (again) for moving the needle in dramatic ways.
This morning when I arose I found a text message from her. She had launched a Facebook campaign yesterday evening to encourage people looking for care work to connect to me. The text message simply read: “call this woman first, tell her that Sarah said Ahlea said I should reach out.”
Just like that, by 10 o’clock this morning we have a new care partner coming to train this afternoon at 4 PM. I’m holding my breath really as the woman seems an incredible fit, and one more incentive to find a way to keep this train running.
By 11 AM I have followed up with another woman, again found through the Facebook campaign, who is coming this afternoon to confirm what seems an excellent interview on the phone this morning. If all goes smoothly that means replacing our fallen friend and improving team resilience in under 24 hours! This is some kind of wild record in my 17 years of looking for care.
In the midst of it I’ve managed to schedule a medical imaging appointment, resolve the technical issue with my blog subscriptions mailing, and do a little polishing on the fundraising campaign.
My head is spinning as I roll into an afternoon and evening of interview, coaching, and training. The world is moving at a clip, my body crippled but coming along, the mind circling to keep up.
Life in the time of Corona is triage.
All around, I write for posterity as I imagine you must be sensing the same in real-time, tension and confusion ripples through. Perhaps a perfect opportunity to look for and find new and maybe some not so new ways of caring for, connecting with, and growing with one another.
God gets to know things, we just get to ask questions…