There is a lot going on and I have some news to share, but I thought I would start with something that is going right. I finally got music back.
It has been many months since I have been able to listen to music. Even my most happy, comforting music was too much for me to bear for way too long. But, something clicked back into place when my brother visited and we watched Wicked together.
It didn’t happen right away, but when Ms. Galinda/Glinda herself, Kristen Chenoweth, updated her “For the Girls” playlist on Spotify, I actually sat up and took notice. This is her annual International Woman’s Day playlist. It starts with a duet between Kristen Chenoweth and Ariana Grande singing “You Don’t Own Me.” That was it. That was all it took for me to get my music back.
Since then, I have done deep dives into Cynthia Erivo and Chappell Roan and enjoyed myself immensely. Which is good, because I have needed something beautiful to help offset the horrors happening in the world right now.
So for the news part of the show. I am off TPN (hold applause).
Back in August (remember August? Before the shitshow came to town in DC?) I was only supposed to be on TPN for a couple of weeks until I could resume enteral feeding. Well, here I am 7 months later, off TPN.
So why are we holding applause? Because, I still have to keep my PICC line for hydration. While TPN itself can be hard on the liver and kidneys, it is not the real danger that kept my GI from being willing to manage it for me. No, the issue is the risk of infection because the PICC line is a route from the outside world straight to your heart. Once I get the PICC line out, I will be holding up a big applause sign, believe me.
The reason I need to keep my PICC like is that I need supplemental hydration because I am still venting copiously. And it has been going on long enough that I am beginning to have circular conversations with my GI. When this first started in early February, she sent me for an abdominal x-ray. Since then I have had a CT for the same issue. Both clear, no action taken. Still venting copiously.
Today my GI told me to get another x-ray for the same set of complaints. This time I pushed back. If I am going to suffer the misery of the drive to and from the hospital for an x-ray, I want to know what they will be looking for that is not in my existent imaging.
I will admit that I am being super cranky because my gastric imaging test that was scheduled for tomorrow, in preparation for which I have been off my motility meds since yesterday morning, is having to get rescheduled because we are still waiting for approval from the insurance company.
We deliberately scheduled the procedure far enough out so that we would have insurance approval in time. But yesterday, I received a fax from the insurance company –yes, a fax, complete with fax cover sheet–in my email asking for more information. Except that the information they were requesting was already on the paperwork that had been submitted.
When we pointed that out to the insurance company, they agreed that yes, they did indeed have the information that they were asking for, but that they had not yet begun their deliberation process because the submission was incomplete. In other words, who knows when we will get an answer, but it is incredibly unlikely that it will be before tomorrow morning. Thus the rescheduling.
I do admit to feeling like I am racing a ticking clock. I have no idea what is going to happen to Stanford once the dust settles around cuts to the NIH. Those are going to cut institutions like Stanford to their core and I am terrified at what that is going to mean when it comes to access for care.
And that brings me right back to my music. That will keep me adequately distracted for a little bit. Maybe in that window, I will finally learn how to retain my fluids, get rid of my PICC line and get back to spinning. Or monkeys might fly out of my butt.