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, November 25, 2014

One Thing

If I could only have one purpose on this Earth, one life goal, one daily motto, one publication, one website banner, one profile picture, or one piece of advice to anyone, everywhere, it is this.


What I do with the dash between my date of birth and date of death will never be enough, but the question I know I will ask in my last breath is "did I make a difference". I hope and pray the answer will be a humble affirmative. I'd even settle for a "probably" if it would mean my existence isn't in vain.

I may not have much or be much, but may God help me, in spite of myself, to give it my all.

Sunday, November 23, 2014

Local Sleep Consultation

I finally finally (did I mention FINALLY) met with a pulmonary sleep physician a few days ago. He was great. We discussed my history and my condition (he knew it had to do with potassium, but didn't realize the primary form involved a myopathy or that the MDA was involved). He said he'll read up on it, and I offered to give him more information when I see him again.

A bit of back history on me: I had two sleep studies at age 20. I was found to have restless legs and borderline sleep apnea. It wasn't enough to officially diagnose me with sleep apnea, but they said I was holding my breath for no reason and asked me why. It annoyed me because it's not like I do it on purpose or something...hello. At any rate, they were sleep psychiatrists and wanted to talk psychiatry and give me klonopin, both of which I declined. The hospital eventually shut down, and my records were lost (probably in Hurricane Katrina).

I would have been willing to see a sleep psychiatrist again, but I'm happy that he ended up being a sleep pulmonologist instead. With my breathing issues and muscle disease, that is the right place to be in my opinion.

The doctor was very confident that my condition has worsened since age 20, and diagnosed me with obstructive sleep apnea. He wants to confirm it via sleep studies, of course, which is what I was expecting. Their schedule is incredibly backed up, so I'll return for study one on January 30th. The second will take place a week later.

He said he has no doubt I am not breathing well at night, considering that I choke and occasionally snore. He also diagnosed me with sleep deprivation (glad that's finally documented) and said he hopes he'll be able to help me with that via oxygen. The studies will tell him what kind I need. I already have a CPAP machine at home in the closet that was donated to me, I just couldn't get it calibrated without the studies, so here I am. He is hoping that the CPAP will be the right thing for me so I don't run into any trouble with getting other equipment (financially speaking).

Overall, it was a solid consultation. He was very nice, eager to answer any questions, and seemed positive and helpful. We'll see what happens come January. I'll keep you posted.

Monday, November 17, 2014

I'm a busy bee!

...or is that a butterfly?


A friend and I had a craft booth at a local church fundraiser. It was a blast. She painted faces, and I sold a few goodies:


My sketch journals were a conversation starter. Loved meeting a few Whovians on the Mississippi Coast! I also made my chocolates, as I often do during the holidays. They turned out pretty darn wonderful.







Yummmmmmmmmmmmm!

I was on my walker and could have never done any of this without assistance from friends. We didn't make a ton of money, but we sure laughed a lot, as we usually do. I went straight home afterwards and crashed. I've pretty much been down with muscle weakness ever since. I'll hopefully see some improvement in spite of the extreme weather fluctuations we're getting at the moment:

It was 73 at 2:00 this morning. It will be 27 tonight.
Small fluctuations are noticeable. Large ones are detrimental.
May God have mercy on all of us with systemic disease.


Last week, a friend and former Bob Ross student invited me to The Melting Pot for dinner. Folks, it was one of the most incredible dinners I have ever experienced:





Everything was amazing. I loved every minute.


The weekend prior, I carpooled with my family to Louisiana. You'll never guess why. In fact, I cannot believe I haven't blogged about this yet. I've been living in a fog since Mom died and I've forgotten to share so much here. At any rate, here is the good news:

My little Zoey Boo Boo is going to be a BIG SISTER!
WOOOOOOHOOOOOOOOOOO!!!!!

We are so excited to have another princess in the family! And what a special honor that they're naming her after me. It makes me cry if I think about it too much. I can't wait to meet her!!!

The baby shower was nice, and I was glad to see my nieces.

I'm thankful that I could go to Louisiana to spend time with everyone, and I hope and pray I am able to return when the new baby arrives in less than two months! Squeeeeee!

I haven't forgotten about National Novel Writing Month. In fact, I have been a writing fool and I'm on track to reach 50K at the end of the month. I've met with nearly 20 other writers around the gulf coast over the last 2.5 weeks, which has been great. I hope we can keep in touch after NaNoWriMo ends.

As I said earlier, my body is pretty fed up with me being so active, so I'm down for the count at the moment. I had to bring out the emergency potassium and magnesium in an attempt to get my condition under some sort of control. It's been a rocky couple of days, but I'm doing my best.

Thanks for hanging in there with me, readers. I hope everybody is doing great.

Saturday, November 1, 2014

HKPP Medications Update

Just letting medical-related readers know that I've updated my HKPP blog with a new list of medications and supplements, as well as a humorous post with TMI, a rant about emergency care, and other ramblings. If you have HKPP or are following my medical posts, feel free to subscribe over there. (You're welcome to stay here, too. I didn't mean it like that.)


I appreciate all of my readers, both new and long-suffering. I've had over 100,000 hits now, and some of you have been with me for 5 + years. Sometimes I wonder if you genuinely care about me or if you simply enjoy being a fly on the wall of someone else's train wreck life (ha), but either way it's pretty amazing that you're still here.

Thanks for riding the roller coaster with me.

National Novel Writing Month 2014 Is Upon Us


IT IS TIME.

I AM NOT PREPARED.

JUMPING OFF THE DIVING BOARD HEAD FIRST.

IF ONLY I KNEW HOW TO SWIM.

CAN YOU TELL I'M FREAKING OUT?

BECAUSE I AM.

Okay, I'll stop with the shouting. :)
50,000 words. Let's do this.
Ready...set...goooooooo!