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.

2.15.18 Paula the Port

Monday I had a hot date with Nina the Great at UTSW for a punch biopsy for nerve fiber layer density, kachow!

This donation was for a couple of friends of my cousin Tyler’s who have a lab at UCSF and as you know, research is always in style. Appointment was painless and I got to see some of my favorites. One major item on my “to do” list while I was on campus was to catch Dr. Trivedi and discuss my undying love for my port – now named Paula – used for radicava ridiculousness. Per usual, with new drugs comes differing opinions on administration. My friend Meg is a badass and not only started with a port rather than IV, she was able to get certified to access at home. My neurologist, Dr. Heitzman, is more conservative so he had me go through the IV routine prior to surgery so that if I was allergic or had a reaction it would happen before surgery. Some doctors are recommending picc lines. Part of my job in this war on ALS is to advocate for myself and others who are fighting this battle with me. For me a picc line wouldn’t be an option: i’m waaaaay too crazy for that. Y’all know I would have pulled it out doing something ridiculous, like rolling over in bed, so having Paula the port completely internal means sloppy Sunny is less likely to screw it up. To each their own, I can only voice my own experiences, but you don’t know what you don’t know, right?

I forgot that Monday is ALS clinic day at UTSW. I’ve discussed before my reasoning for attending Texas Neurology’s ALS clinic and going to UTSW for research. Because I don’t attend this clinic I didn’t readily know the patients but y’all know me well enough to know I made friends while I was there. Most were curious about Phil, and it was fun to meet new pALS. This community is full of amazing people though we’d all give anything to jump ship.

Thank y’all for reaching out and checking on me after Monday’s appointment. I’ll soak up all of the love and attention, always. Friday is clinic day for me, yippee! Hard to believe I’ve been going for 3 years now and how much has changed since that freak snow storm during my first appointment. Fingers crossed we’ll never have to go through that insanity again!

Gross True Love

How I Live Now: Life With ALS





At my most recent clinic, the nurse pulled out my mic-key – the feeding tube that allows access to my stomach – so they could give me a fresh one, and all of my breakfast came out like a volcano. Before the nurses could even react, Evan dove in and covered the hole with his bare hands. Remember, my feeding tube version of vomit was pouring out. Nothing grosses him out when it comes to me. Nothing. And that is true love in all its gross glory.

Please enjoy the illustration below, and have a happy Valentine’s Day!

J/K about the illustration. I love you too much to do that to you. (insert adorable, mischievous grin)


Rachel “The Volcano” Doboga

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