Yesterday was a big day for a couple of reasons: 1. Round 5 of Radicava Ridiculousness is rockin right along - 4 days down, zero excitement to report. 2. It's officially my last week of Short Term Disability and I celebrated by sleeping until 2PM - homegirl was sleepy. 3. Our house is finally getting … Continue reading 1.30.18 Three is my Favorite Numba
Radicava Ridiculousness
Round 4, 8&9&10
ALSFRS-R: 35 Round 4 is done. Round 5 starts 1/26/18 No news is good news, and thankfully no side effects. Other than to the tecaderm, but we knew that. Also, I earned my "dot" where the needle goes so accessing is even easier. see it? see it? see it? another round of radicava ridiculousness complete!
Round 4, days 4 -7
Kenneth knocked out days 4&5 then I brought in a celebrity nurse for days 6&7 of this infusion. Wonderful best friend getaway in Austin for a couple of days of wedding planning and catching up. She completed both infusions and deaccessed the port without passing out, winning! ALS is teaching all of us new things. … Continue reading Round 4, days 4 -7
Round 4, Days 1-3
Ringing in 2018 with round 4 of Radicava Ridiculousness. Had to stick twice to get accessed but I should earn my needle stick scar soon so that won't be an issue. Nothing exciting to report, which is a good thing, so I'm sharing with y'all pics of the fur babies Christmas presents.
Round 3, 9&10
and just like that, we're done with round 3. Round 4 starts 12.29.17. ALSFRS-R Scores: 12.10.17: 34 11.16.17: 35 10.19.17: 34 according to Radicava.com : ALS Functional Rating Scale–Revised (ALSFRS-R) The ALSFRS-R consists of 12 questions that evaluate 4 domains (fine motor, gross motor, bulbar, and respiratory function) in patients with ALS.1 Items: speech, salivation, … Continue reading Round 3, 9&10
Round 3, 7&8
de accessed the port after last nights infusion and it made this suction kind of pop when it came out. i jumped, and we almost lost kenneth. poor guy, he's come a long way with all this stuff. today's appointment included cookies #winning two more infusions and we're done with round 3, hooray!
Round 3, 5&6 and then some
Port life is a dream, round 3 is easy peasy lemon squeezey. Today was my 12 month visit for the PHENOTYPE, GENOTYPE, AND BIOMARKERS (PGB) IN ALS AND RELATED DISORDERS study at UTSW with Nina the Great. Good to catch up, got my blood on the second stick (after we shot the tube out once), … Continue reading Round 3, 5&6 and then some
Round 3, 3&4
Two more flawless infusions with nothing overly exciting to report, whoo hoo! I found this fun little info graphic the other night while I was looking for something in my insurance app. Interesting article from The New York Times: A New Drug for A.L.S., but the Diagnosis Remains Dire states: The Food and Drug Administration … Continue reading Round 3, 3&4
Round 3, Days 1&2
went back to the surgeon, turned out my tubing was pinched and that's what was causing all of the issues. Day 1 of round 3 was easy, hit on the first stick, easy flush, easy infusion. I got super duper nauseous a few minutes in but it went well. Day 2 was easy too, and … Continue reading Round 3, Days 1&2
11.22.17 Port Party Part Deux
Yesterday was more along the lines of the aforementioned port-a-potty rather than a port party but I'm hoping we're in the clear now. turns out, in true Sunny fashion, the tubing to my port was kinked and that was the source of the issues during infusion. also, in true Sunny fashion, I drove myself to … Continue reading 11.22.17 Port Party Part Deux
SunnyStrong 