2.20.18 Losing My Mind

So remember when our house flooded in January? Yeah we’re finally getting flooring done this week, thank goodness. It’s been exhausting and dirty and exhausting but I cannot wait to see the final product. Determined to stay optimistic, dammit.

ALS Clinic on Friday was fun and marked my 3 year anniversary of being in the clinic at Texas Neurology. Insanity. I had a cute date, we were early, surprise visit from a cousin, got to sit next to Tom, and we handed out all of our valentine’s treats.

Everything was good, the same or better. I lost two pounds but I’m spending most of next week in San Antonio with Jaci eating all of the mexican food so surely I’ll find them. Promised to finally complete voice banking by next appointment in May so I just need to get it done – it’s just talking, which y’all know I do a lot of, so I don’t know why I’m having such a hard time committing to it. I had 3 backwards falls two weeks ago so I asked Dr. Heitzman what to do about those and he told me to stop it, so that’s what we’re going to do – stop falling. Sound good? Breathing was better, but we went ahead and ordered the BiPAP machine since my insurance is changing soon. I have put off ordering it in the past because it’s an automatic disqualifier for clinical trials and that has been my priority for a while. Because radicava is so new it is also a disqualifier for clinical trials, so why not have all of the toys? Um, PT agreed with no more falls, OT wants me to stretch daily, “The Boss” Sheliah helped me apply for student loan forgiveness based on disability – #winning – Research Todd has a new study starting soon with Answer ALS, and it all started with a big bang, hey!

I started taking Protandim NRF2 so we’re monitoring any improvements there. Had an issue with the Nuedexta manufacturer but we got it figured out. Left Dr. Heitzman with homework to figure out how I can find enough energy to enjoy all of the traveling and wedding extravaganzas that are on the books, so we’ll see what he comes up with. No body has time for exhaustion, my girls are getting hitched! I’m working on scheduling another punch biopsy, minor misunderstanding on storing procedures so we get to do it again, yay!

Per usual, we followed clinic with margaritas, an entire pitcher of them. Jess had never been to Joe Ts so we fixed that as quick as we could.

Round 6 of Radicava Ridiculousness starts Friday and this time Jaci is the lucky one to deaccess me so that’ll be fun. Pray for her. What else? So far we’ve done well with our Lent plans, thank you for the recipes – keep’em coming. Spent yesterday with my sweet nephew and his mama and my mama, he’s funny and walking and always hungry. He should fit in well around here. I’m sure I’m forgetting something or someone, losing my mind and everything in it.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s