Fun Facts and FAQs from the hospital

How are YOU?

I am fine, see: 

I rocked 2 hours of sleep for about 40+ hours, and then got 5 the next night, and I feel surprisingly fine.  #probablymanicfromsteroids

I am being poked, prodded, and examined every hour (or more), so I have much less time to read than anticipated. My doctors and nurses and staff are all wonderful. I am also an interesting case and a "walkie-talkie" (as in, I can independently walk and talk) so the residents and fellows generally seem to hang out and hear a bit more rather than run away. 

I had an EMG again today (Friday 12/4/2020). Highly unpleasant. Do not recommend. It was a resident who was new to the service so he was inserting needles and wiggling around a bit more than usual. It was not my favorite. Also, it is cute that he thinks he can hold the needle still while using the computer. He can't. That said, he was friendly and kind. I tried to be pleasant as well. I was only snappish once when he asked if I had an EMG before, and I shot back that I DID and it was supposed to include the leg that he was doing today, but they didn't do it even after I told them that it was in the orders. He didn't like that I followed up on how I was a bit tired of not being listened to. He stared blankly for a moment then found a reason to leave the room. (Perhaps to check that I was right about this leg being in the orders from October? Hard to say.)

The other annoying thing is that they definitely adhere to the times for administering meds. I am not so keen on midnight-Tylenol-wake-ups when I am having such a hard time sleeping... but we do what we have to do. 

I appreciate all of the calls, texts, facebook messages, etc. They are keeping me very busy and happy. 

I don't love the hospital, but I appreciate it. I also like walking, so there is that.

So, um, why are you there?

The brief answer is because I am getting a ton of steroids in order to protect my nerves from more permanent damage. I am not supposed to be on steroids while I am on immunotherapy. I don't think it is dangerous, per se, but it is not ideal (again, in the wisdom of Dr. Stein, "but so is not walking.")

The slightly longer answer is that the steroids pretty much make me diabetic while I on them. Thus, they have to check my blood sugar every few hours. They are also monitoring my blood with labs daily, and I am on fluids etc. 

I will likely leave the hospital with an outpatient taper of oral steroids as well. 

Also, I am a very interesting case, so the trainees all need a good look. ;)

What is it like there?

Honestly, I am at one of the top 5 best hospitals in the US. I have a huge SINGLE room! #upgrade AND I have a BEAUTIFUL view. Also, about that room: My nurse just told me that it is basically the presidential suite on this unit. I guess being an interesting walkie-talkie pays off ;) They didn't even know what a delight I am when they gave it to me. Someone must have pulled some strings ;)

How is the food? Are you super hungry from steroids?

The food is what you might expect, but there is plenty of it. I also have snacks from home, and Chris can bring me something if I ask him. I am not on any restrictions with diet. I am fairly hungry, but it isn't insane. I have a really bad taste in my mouth from the meds which is definitely one of my most annoying side effects... so i just keep coating my tongue with pudding #medicalmcguyver #dowhatyougottodo #sacrificemybody

Visitors?

I am permitted one person per day. The visiting hours are 12-6. Chris is coming most days. There is one day that (depending on discharge dates) he might suggest that I have a different buddy. I am allowed to FaceTime. This means that I have read Harry Potter to Kenny at night and gotten the Harry Potter Lego Advent Calendar update in the mornings. I also got to see darling Max play at his kitchen-- he is so good at standing and making a baby keurig coffee!

(...because I was trained by Barbara Bunk #bunkiejunkie...) What do I LOVE about this hospital stay?

I love that I am being offered pain options that are not opioids! My pain is managed well right now, and that is taking a nice load off of me. I will definitely ask for many of these options to come home with me. Although, when they ask if I am tired from them, they then laugh because I am on the steroids which keep me up.

I love my PT who was thoughtful, kind, and just couldn't start the exam until she sat down and heard my take on the "scandal" from years ago in Tarrytown. She also was totally willing for me to call Lanie so she could also hear the summary and plan. She thoughtfully listened to Lanie's questions and thoughts--very unlike the doctor who, upon examining me, heard me say that "I essentially have no hip flexion" but when I managed to get my knees up while laying in bed asked "well what muscles do you think you are using then!?" and then completely ignored Lanie's response as she called out from FaceTime exactly which compensatory muscles I was using! 

I love my view and that I have a single room.

I love all of the love and messages that I am receiving. 

I LOVE that my old NP Tiye took the time to come over and chat! She really is the best. It was after 5. She totally came over on her own time to visit. <3