I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Tuesday, July 26, 2016

To the self-righteous hypocrites and haters of the ice bucket challenge

Click to get to the article.

May you all take a break from your charmed lives to swallow this planet-sized serving of crow.

Have a nice day.

Thursday, July 21, 2016

Monday, July 18, 2016

Banana Advice

Thanks to Geoff Lehman for the meme.

Please cease and desist this terrible advice to HKPP patients. :) I would personally have to eat 26 bananas a day, and not only would my body not absorb or magically utilize the potassium properly, I would die from the carb load. We don't care that bananas have a little bit of potassium in them. You don't understand Primary Periodic Paralysis.

Stop the madness. Thank you. :)

Saturday, July 9, 2016

Medical Equipment Drama

It has taken me a few days to get to this post because of all that has happened this week, but here's a short update:

Indy 500 (my rolling walker) and I have visited a large local med equipment company a couple of times. They may be really nice folks, but they are the absolute worst salespeople I've ever met. Every time I have gone there for walker or wheelchair discussions, they have said things so ridiculous and aggravating, I've wanted to scream. Just a few examples:

"It doesn't matter what kind of seat is on the walker, you're not supposed to be sitting on it anyway."

"That one only holds up to 200 pounds." (Side note: I'm not 200 lbs)

"The whole chair is 129 pounds. It's not THAT heavy."

"You don't need a wheelchair right now. You don't want to become dependent on it."

"You look like you're doing fine."

These people have tested my patience to its maximum level.

At any rate, they informed me that a power chair lift cannot legally be installed on a Buick because it sits too low to the ground. They said some people have been brave/crazy enough to rig a lawn mower trailer on the back of their cars for this purpose, but that is not an option for me for several reasons. Mostly, I wouldn't do it because power chairs are a thousand bucks, and I'm not "rigging" a thing. It will be done right, or it will not be done at all. But I also live in public housing with one parking space, and a trailer would block incoming traffic. This is not a possibility.

A truck or SUV with a proper hitch is the only way to legally do this, so that is what I'm facing. An approved vehicle first (unknown cost), then a chair and lift (which amounts to about $1950, not counting tax, accessories, or lift installation).

In summary, I'll have to accept my limitations on the walker unless my circumstances (finances, living arrangements) somehow change.


Friday, July 8, 2016

8 pounds, 2 ounces, 20 inches, and Infinitely Loved


In the midst of so much pain, heartbreak, chaos, and death
there is the miracle of joy, hope, comfort, and life.
Thank you, Asher Grey, for arriving a little earlier than expected.
You are a precious light in our very dark world.

Tuesday, July 5, 2016

So much to do. No power to do it.

My mind is constantly churning information. Instead of focusing on and executing one project at a time, it wants to mull over fifteen ideas at once while getting absolutely none of them done.


This is my life every day. It is frustrating and exhausting.

Constantly thinking about what should be done isn't helpful when you're too weak and tired to make it happen. Icing on the proverbial cake, I guess. I hate cake.

Sunday, July 3, 2016

Grandmother's Independence Day

I've always called July 3rd my grandmother's independence day. I can't believe she's been gone nine years now. She was one of the best people I've ever known.


My grandmother loved everybody, even all of the people who did her wrong. She took too much crap, but it was her nature. I'm almost sure she loved me more than anybody ever has in this world. She (and my other grandmother) defended me when nobody else did, and I'll never forget that.

I was her part-time caregiver for 3 1/2 years, and her slow, cruel death from Alzheimer's is still the worst thing I've ever seen. She was such a fighter and didn't want to leave us...she suffered for a decade. We were heartbroken, but relieved that she was finally free. I will always miss her terribly.

When I arrive at death's door someday, I hope she's on the other side waiting for me with buttermilk biscuits, butter beans, and sweet tea on the red and white checkered dinner table.