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!