An update includes the extreme pleasure of nightly pajama parties at my home.

Friends have been taking turns spending the night at Reenie's Reach, which is also the name of my home. Armfuls of good foods and fellowship and laughter come sashaying through the doors, and the frivolity commences!

I was having a little bit of anxiety during my evenings, which are the most vulnerable time for me and my illness. I think I might be approaching an *okay* point where I can do just fine now, but having dinner with someone, somehow or another assuages the isolation of my illness. It connects me to the world in so many wonderful ways.

Linda, Nancy, and Sue have been remarkable. I haven't enough words of gratitude for their generosity.

Last night Sue arrived with a slumber party gift - a pair of silken jammies. I still go to bed in coed attire - T-shirt & my big girls. I don't think I've worn jammies since I was 6 years old. They felt wonderful as I slipped between the sheets with silken ease. Dreamy!

Linda has become my personal caterer. Good heavens - she's spoiling me and I'm loving every mouthful. Pirfenidone has a knack of ruining one's appetite. Linda has proven medical research wrong. *laughing*

Nancy has come bearing delicious snacks. I've been meaning to tell her that the little seed cakes are beyond divine. (Sidebar: Next time you're at Costco, pick up some for David and me - he'll love them!)

This is to say - I am one lucky woman.


*****


Yesterday I received an email with an attachment. The attachment was a sermon written by my dear friend, Mary Kate Myers. She's studying for her Master of Divinity, Theology at Methodist Theological School in Ohio. She had to write an upper level sermon focused on interpreting the Wisdom Traditions found in the bible's Proverbs, Job, Ecclesiastes, and Song of Songs. Mary Kate's cover email noted that she'd struggled a bit with this final sermon. For reasons that gigantically humble me, she decided to use me as her muse to guide the framing of her words. It wouldn't be very humble of me to repeat her kind observations, but... well, what a gift of heart to give this woman. Never once have I set out to inspire... I've just lived my life as best possible, and Mary Kate wrote about my best. Thank you lovey. I've never been so completely honored.





My beautiful Mary Kate



*****



During the arduous process of navigating Cleveland Clinic since late September, I've occasionally thought, "What if I was a bigger nobody than I am?"

That might offend or confuse people, but the truth is, we're all nobodies in any bureaucratic maze - the medical maze is especially scary and frustrating because so much may be in the balance... like it was for me.

I was a nobody who had a computer, knew how to write a good letter, had an evangelical postmistress who put my medical records in a big red box. I had a cell phone, knew how to search the Cleveland Clinic directory to find out who and where to call.

I was set out on my own. I had to learn how to navigate Vanderbilt as well as Cleveland Clinic. I was a nobody who had no clue where to start. Like most of us, I Googled and Googled and Googled. And called and called and called. And left messages that were never answered. Or hit dead ends.

What if I'd been a bigger nobody than I was? A bigger nobody like the rest of the world?

You know what finally got results? I haven't disclosed this until now - someone with very high level connections at Cleveland Clinic stepped forward and contacted the Chief of Staff, twice. I had no idea this person in my life had those connections - she offered. I accepted with complete gratitude. This old nobody was so worn out. Her efforts on my behalf made me a somebody. *sigh*

After 2+ months of navigating the medical maze - scrambling and scratching and sweet talking, I was finally connected. The news was disappointing, but I finally knew what I was dealing with.

What happens to the bigger nobodies?

It scary. It's unfair. The system needs major tweaking. There has to be a liaison, a bridge. I was never ever even given a telephone number. I had to research everything on my own.

I can't even begin to imagine the legions of people who simply give up.

What if I'd been a bigger nobody than I was?


*****


I was going to post the following on Facebook, but thought I'd do a test run here. What do you think?

Dear World: Please don't send me anymore emails with prayers with threats. Please don't scare me into thinking I need to forward prayers to 20-1,000 people in order to avoid bad news... even death. I've got it covered. Okay? Thank you.

As always, thanks for stopping by. Love.