February 18, 1:46 pm

Wow. Two years ago. I was just commenting that I needed to follow up with Christie Clinic and say: It was a freakin’ brain tumor you douchebags.

[In reference to the following Facebook Memory from February 18, 2015:]

I got off the phone with the COO at Christie Clinic a few minutes ago. There was much apologizing, which was a good start. He didn’t appear to want my ideas for improvement as much as his voice message indicated, but it was still a good conversation.

He told me that the doctor’s department chair and the clinic’s chief medical officer would be taking up the complaint with the rheumatologist.

Also, it just so happens that the board is holding their regular meeting tomorrow morning. My open letter is on the agenda.

The COO also was apologetic that my primary doctor was moving her practice and offered to help me with my search to find a new doctor, even one in a different health system. I declined, of course, picking a doctor is just something I have to do–it’s personal. But I respect that he was trying to offer something of an olive branch.

I pointed out the reviews for the doctor on various sites, conceding that they were just online reviews but insisting the similarity of complaints pointed to this not being a random, one-time thing. Without actually saying it, he seemed to be suggesting it was a problem they had dealt with before for this particular rheumatologist.

He agreed to keep me informed as much as he could. Obviously, any HR proceedings would be confidential. But I hope that maybe some official policy could result from this.

In the end he thanked me for taking the time to talk with him and help him understand the context of the situation — namely that he could report to the board that there were no prior problems that had escalated. All it takes is one horrible interaction to lose a patient forever.

February 17, 10:09 pm

My mom rocks. Can’t hear anything over how cool my tumor cake is!

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Also, mom got me a tumor sign that gets me out of any and all responsibilities. 😂😂

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February 17, 2:43 pm

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Mom says my hair is growing fast already. I might keep it buzzed forever though. Damp washcloth & I’m ready to roll! 😂

Still dealing with headaches, but they’re manageable with the meds & even though I’m not getting tons of sleep, I am getting some. Which certainly beats two years of insomnia.

The weather here in the St. Louis area is getting nice. Tentatively planning to eat out once this weekend, assuming I’m up for it.

GOALS!

February 16, 1:49 pm

Brief update today.

I have some weirdness going on on my left side–tingling and numbness. I can feel pressure, but not temperature differences. Sometimes my hand twitches & shakes when I try to grab something.

It could be anything at this point like swelling, medication, nerve damage. I have to actively remind myself that this crazy surgery stuff is just for a diagnosis. I still have a tumor. I am recovering from surgery OK, considering, but there’s a lot more to be done.

Trying to be patient and enjoy eating everything in sight.

February 15, 8:52 am

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Waiting in my cozy new Deadpool hooded robe for the morning pain meds to kick in. Slept about 5 hours straight last night. W00t! Thanks for the Deadpool love, Dawn LaVella Miller.

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