Eva's Gastroparedic Adventure

Not going to sugarcoat it. It has been a tough couple of weeks. Between battling SIBO, titrating the notriptyline and swapping at side effects like so many swarming insects, I am feeling very beaten down.

The Xifaxan I am taking for the SIBO clogs my vent tube when my stomach forces out whatever detritus is left after the hour that I close off after taking my meds. It lets the pressure inside my guts build, leaving me nauseated and miserable. All it takes is a simple flush to fix, but it is just an extra hassle that I don’t need.

The nortiptyline titration has been difficult as I try to manage the constipation it caused. Everything coming through my digestive system is delayed, so it can take days to try to re-regulate my system. I finally got that worked out and I started feeling an uncomfortable buzzing feeling in my lower abdomen. I finally figured out that the way that I was feeling gut motility was changing. So the good news is that the nortriptyline seems to be working, but I still have some adjusting to do.

The pain has been bad enough lately that I am barely managing it, even as I throw absolutely every tool in my toolbox at it. I believe that I have come through the worst of it (see the whole adjustment and SIBO issue above), for now. And that “for now” is really beginning to get to me. Every new symptom, every bad day, I find myself wondering whether this just a temporary thing, or is this my new normal?

All this is leading to a whole bunch of anxiety around pain. Which believe me, does nothing to improve the situation. I have gone back to my pain therapist (in addition to my usual therapist) to see if we can work on this new anxiety. Breathing techniques do not work for me because breathing, particularly deep abdominal breathing, causes pain. Which, as you might imagine, is counterproductive. So far, I have been mostly managing my anxiety by spinning. And I have been doing a lot of spinning.

But, I can’t spin all of the time. There were a few days in the past couple of weeks where I was just not up to spinning. And, although I have done it, getting up in the middle of the night to spin isn’t ideal. So, clearly I need to add some more easily accessible tools to my toolbox to manage my anxiety about pain.

In the midst of all of this chaos, two friends came down from Portland and we got to hang out with them in a beautiful park, with a stream (complete with picturesque deer) and lots of shade.

The visit definitely cost me, but I have absolutely no regrets. Seeing good friends means so much to me when such joy is so hard to come by these days.

I can not underscore enough how much peace spinning brings me. I can sit at my wheel for hours (with lots of stretch and comfort breaks) and just forget about everything. I only come to when the pain or the nausea gets bad enough to break through my creative flow. Otherwise, it is just me and my fiber.

I do get frustrated that I can only ply on good days because that takes more energy than spinning. I really want to finish off my yarns, and more than that, I want to use them in projects. I have yarns designated for specific weaving and knitting projects, even as they still sit on their bobbins. I wish I was a process spinner like I am a process knitter, but I am not. I dream of ways to use my yarns as I spin them.

The good news is that bobbins are cheap and I have enough variety by color and fiber type to keep me spinning for a nice long time.

It has been a very busy couple of weeks and I have lots of updates. I have been feeling a bit better lately without the Small Intestinal Bacterial Overgrowth (SIBO) that had been making me extra miserable for months. As we seem to find ourselves not in Crisis Mode for the first time in a long time (p’tuy, p’tuy, p’tuy) I am trying to get caught up on some non-gastroparesis medical issues and take care of some routine medical visits like my annual mammogram and maybe get some new glasses.

First off, I got to see my GI last week. I only get to see her once every 6 months, so this is a big deal. We discussed how the Motegrity is working to increase my motility, unfortunately, that also means that it is making me miserable. For those in the back, my brain misinterprets motility as pain. Plus, while it increased my motility, it did nothing to relieve the vast quantity of air my stomach is producing. Nor did it help me retain the fluids I drink. They still all go into the vent bag that is attached to me 24/7. These were all things that we were hoping the Motegrity would help with. She suggested that I try halving the pill. If that doesn’t work, try quarters.

She also gave me an Rx for Xifaxan, so that the next time I get SIBO, I already have the meds in the house. This time, I was able to advise her on how to write the Rx so that I would get the meds quickly. It worked so well, that they have already arrived from India.

Lastly, she also seemed to agree that the GI Nurse Practitioner that I had assigned was useless, because she switched me to her PA who agreed with my SIBO diagnosis and got me treatment. This is a biggish deal, because I had been told that once I was assigned one of my GI’s assistants, I was to stick with that person. And the PA restated that policy when I was accidentally assigned an appointment with her.

If you recall from my last update, my J tube was looking a bit icky, with bits of formula stuck to the inside. It took me so long to get the ClogZapper, that by the time it arrived, it was relatively useless. I did two rounds of ClogZapper and there was still detritus left afterwards. It was time for a tube swap.

Last Tuesday, I got myself a brand new tube. It was a bit overdue, as the Interventional Radiology doctor commented on how it was getting pretty clogged after he pulled Etisarap out of me and inspected her. I now have a new, shiny, Etisarap. Well, sort of shiny, it is amazing how quickly formula can start building up in some areas. But, she is clear and working perfectly again. And I have one more dose of ClogZapper in the house so I can stay on top of the buildup a little better this time. Regardless, barring clogs, she should get replaced about every 6 months.

The big non-gastroparesis related medical issue in need of attention was my sleep apnea. My CPAP hasn’t been working properly for the past few months, but I just did not have the spoons to see a sleep doctor when I was in that much pain. For whatever reason (the sleep doctor confirmed that the setting on the device were correct) my CPAP stays at low pressure all night, which is only a problem if I am sleeping on my side. But when I sleep on my back, My stomach fills (uncomfortably) with air. So I spend my nights literally vacillating between breathing and stomach comfort.

I strongly suspected (and was proven correct) that my insurance company would have plenty of hoops for me to jump through to get a new CPAP. After meeting with the sleep doctor it became abundantly clear that I would need to do a new sleep study. But at least I could do it at home.

I did a home sleep study this weekend and it was awful. I already know that I can no longer sleep without my CPAP (even in its semi-functional state). And as if to add insult to injury, the study required that I wear an elastic band around my waist to track my breath movements. My abdomen is incredibly sensitive to touch. I can’t wear clingy clothes or waistbands that are at all binding anymore. The prospect of having to try to sleep with an elasticized band right on my stomach was daunting to say the least. Surprisingly (and with the aid of increased pain meds), I made it 7 hours before I ripped the thing off and called it a night.

I spent the weekend recovering and David brought the testing devices back to the sleep doctor on Monday. Fortunately, the data is good and I should be hearing back in 3 weeks with the results.

Ok, now on to the exciting news. Well, after some necessary background.

As I mentioned above, my brain misinterprets gut motility as pain. This sucks because most people’s guts move all of the time. My guts aren’t quite as active, but they are active enough to keep me pretty miserable much of the time. GIs tell me that increased gut motility will help my nausea. But every time they give me motility drugs, the pain is untenable.

I have medication-resistant depression. Despite having been on anti-depressants for decades, the only thing that has ever actually resolved my depression is Transcranial Magnetic Stimulation (TMS). After my first round of TMS in 2019, my then psychiatric NP and I started a very slow taper off from duloxetine, which I had been on for almost two decades. I had read horror stories about withdrawal issues, so we deliberately tapered very slowly.

In May 2023, I completely went off duloxetine and promptly ended up in the hospital with abdominal pain so bad that I could not run my enteral feed. My GI said that duloxetine was among the anti-depressants that have been identified to help with gut/brain issues. So she put be back on it and my gut pain got better. But only to a point.

About two years ago now, one of my many GIs in NYC suggested that I try shifting from duloxetine to nortriptyline because there is good data showing that it can be more effective than duloxetine with gut/brain issues like mine. I had concerns about going off the duloxetine again, without simultaneously tapering up the nortriptyline lest I end up in the hospital again. Mary quickly found me a psychiatrist who would be willing to work with my GI to make the shift. Then we moved to California.

Once we arrived here, I explained the plan to shift me from duloxetine to notriptyline to my new pain doctor at Stanford. The psychiatrist in NY had mapped out the transition and said he would be happy to talk her through the process. But she was concerned about my history of depression, and did not feel comfortable overseeing transition herself. She suggested I find a local psychiatrist to supervise the transition.

Over the course of a year, I met with 3 psychiatrists, none of whom were willing to oversee the med transition because it was for a GI issue, not a mental health issue. Especially since I now have demonstrable proof of my medication resistant depression, having had not one, but two successful rounds of TMS.

That was how I ended up meeting with the out of network psychiatrist in the GI department at Stanford. The one with questionable professional ethics who gaslit me. Regardless, I tried hard to get coverage to see him because he seemed to be my last viable option. Even taking the insurance company’s rejection of coverage to the state insurance board. They denied the complaint and we are in the process of appealing.

Last week I met with my pain doctor and told her the sad tale of my trying to find a psychiatrist that would manage the medication change for me. I told her how I met with 3 psychiatrists that said that it was above their pay grade. And I told her about the asshole psychiatrist and the fights the insurance company to be able to see him anyway.

Then I countered with a proposal that she manage the medication change in consultation with a psychiatrist who would monitor my mental health. She agreed. Literally minutes after our appointment ended, I had called and scheduled an appointment with the psychiatrist I had found who had agreed to work with my pain doctor. I signed consent forms online and shared the appropriate contact information. Although my appointment with the psychiatrist isn’t until mid-August, by the end of the week, the two doctors had spoken and agreed to start me on the Notryptiline right away.

I am now on day two of the ramp up, and nothing to report yet. But I am so thrilled with the fact that after two years, I might actually be able to get rid of some of this pain. And I remain giddy that I can spin. Be grateful that this post is already this long, because otherwise I would regale you with the bajillion fiber thoughts that have taken root in my brain. That is what I spent most of my time talking about in therapy this week. I am happy to report that my therapist is thrilled on my behalf.

We are now coming up on a year since Tube Flippalooza, in which I ended up on TPN (IV nutrition) for 9 months, suffering an undiagnosed case of C-Diff for months and then a SIBO infection that lasted months after that. I am not quite back to where I was this time last year, I am still venting continuously and am reliant on IV hydration. That being said, I am also doing better than I was in some very important ways.

Last year at this time, I was still fighting to get myself to full nutrition. I wasn’t yet able to read more than social media and short form articles. I certainly wasn’t spinning.

Going on TPN brought me up to full nutrition very quickly and gave me reading back almost immediately. That was a huge gift. And the extra nutritional support allowed to me to transition to essentially full enteral nutrition through Etisarap (my feeding tube). Something I have now been able to maintain for several months and I am still going strong.

Keeping myself adequately hydrated has been a problem since I developed gastroparesis, because I find drinking to be more painful than eating. Even small amounts of fluid in my stomach are painful. And they just sit there, going nowhere for hours. Since I already had the PICC line, adding in home hydration was easy, and has gone a long way to keeping me comfortable.

By far, the most exciting development is that I now have enough spoons to spin. And not just some days. I have been able to spin every day and it is doing wonders for my mental health. It unlocked all of my blocked creativity. I am now dreaming well beyond my capacity, but that is ok. Because I also have the brain space to come up with creative work-arounds.

After I warmed up by spinning some super easy fiber, I started spinning the other half of some fiber from a grab bag I bought at Oregon Flock and Fiber oh-so-many years ago. I had spun the first half of the bundle when I was first learning to spin on my e-spinner*. I still had the single from the first half on a bobbin. Yesterday I started plying the two halves.

It was such a great reminder of how far I have come, regardless of the 3 years when I couldn’t spin. The single on the first bobbin is filled with rookie mistakes. The single I just spun is also filled with mistakes, but mostly the kind of mistakes that require time and practice to resolve. They are mistakes that tell me that my hand positioning needs some adjustments. Or that my fiber prep was inadequate. All mistakes that mean that I will just have to keep spinning to work them out. And I am just fine with that. I am calling the resulting yarn “First Spins.” It may not be useable for anything more than knitting up a swatch, but I am damn proud of it.

In other news, it took almost exactly a month, but my Clog Zapper finally arrived. I am now kind of regretting that I only purchased two doses, given how long it took to arrive, but oh well.

My J tube has continued to get uglier and uglier, with little globs of old formula stuck to it everywhere. But today that ends. After I disconnect from my feed this afternoon, my J tube is getting a thorough cleaning. I am very much looking forward to it.

This week I also learned that we had lost our complaint with the California Insurance Board. They too, completely missed the point and insisted that I should be able to see an in-network psychiatrist for a non-psychiatric use of a tricyclic antidepressant.

Ironically, we also got a letter this week that our insurance company is at an impasse at negotiating terms with UCSF and MarinHealth. The implication being that if the two parties can not come to agreement by July 1st would put the psychiatrist they are insisting I can see out of network. So the saga continues.

This is particularly frustrating now because the greatest source of pain for me continues to be my brain misinterpreting gut motility as pain. And the switch to nortriptyline, which I have been waiting to initiate for over a year now, is the next step in working on resolving that.  I see my pain doctor on July 7th and I am hoping we can work out a Plan B to get me on nortriptyline as soon as possible.

David foot and ankle continue to heal, albeit a little more slowly than he necessarily always has patience for. He is out of the boot and in a regular shoe. We both prefer to walk around barefoot/in socks, but right now he has to wear shoes in the house to give his foot a little extra support and stay comfortable. I remember this stage from when I broke 3 metatarsals several years ago and it was more frustrating than the boot for me. Being that close to back to normal, but having to still be patient can really suck. Unsurprisingly, he is prone to overdoing it. But he will get there.

*Best adaptive tool ever. I don’t have to expend any energy on the foot pedals or trying to coordinate my hands and feet.

I finished my Xifaxan this week. But before I tell you how things are going, let me refresh your memories.

Back in February, I started needing to continuously vent my stomach to stay even somewhat comfortable. Since then everything I drink, and almost everything I eat, gets vented out. That is why I need IV fluids to stay hydrated.

In addition to the stomach discomfort, the pain in my intestines ramped up. The pain was so bad that I couldn’t make it through the day without tears.

Without going through the whole saga again, my GI team and I ended up with a plan where I would take a course of Xifaxan for Small Intestinal Bacteria Overgrowth (SIBO) and after I completed that, start Motegrity. I have used Motegrity before, and it didn’t help with my nausea. This time my GI prescribed it to help with the gas in my gut.

That brings us to today.

On the one hand, the Xifaxan has significantly reduced the pain in my intestines back to their usual 5 (on a pain scale of 10), which is my normal. I can get through the day without crying (mostly–I still need to close off my vent for an hour after I take my meds and that can get dodgy).

This is good news. I have felt better than I have in months and I am really enjoying the respite. I would be enjoying it more if the nausea were better controlled. I have tried all of the best meds for nausea, and only Zofran does the trick. But even that has limits. Today was a good day. Yesterday was not. That is how it goes.

On the other hand, I am still needing to continuously vent my stomach. I have only been on the Motegrity for a few days, so I am still adjusting to it and it is too early to make any kind of determination. I get to see my GI again on July 7th. By then, I should have a real handle on whether the Motegrity is helping at all.

This is a good reminder that my symptoms are complex and layered. Based on how effective the Xifaxan was, I am comfortable concluding that I did, indeed, have SIBO. And that when I get SIBO again — and given my slow motility and leaky pyloric valve, I am comfortable saying that it is a when, not an if — we will know what to do. In fact, we are hoping to get an Rx for Xifaxan to keep in the house so I don’t have to wait months for treatment again in the future.

It also means that I will be hanging on to my PICC line for a while longer.

Back in February, when I was getting off the TPN and before I started needing to continuously vent again, it looked like I was going to be able to get my PICC line pulled. In anticipation of getting my PICC lines pulled, we bought a couple of thank you gifts for my nurse Jennifer, who has been coming every week to change my dressing since last August when I was released from the hospital.

But, things didn’t work out quite as we planned, and here we are in June and it looks like I will be hanging on to my PICC line for the foreseeable future. Given that, we decided to give Jennifer her the gifts this week. Over the course of time, she had revealed herself to David as a fellow Swiftie, so the gifts were Swiftcentric. She was very touched and appreciative.

Most importantly, it gave David and I an opportunity to express our gratitude to her. She has taught us both so much and continues to be there for us, in person and by text, since those terrifying days back in August, with a brand new PICC line and all of our uncertainties about keeping me safe. She is the reason that when I recently had an issue with my PICC line that once might have sent us spiraling in panic, we were able to calmly resolve it just as any skilled infusion nurse would.

Just to be clear, this is the level of care that absolutely everyone should be receiving. But I know from way too many stories in my gastroparesis and tubie groups, that I am incredibly lucky. Lucky to have had a consistent nurse throughout. Lucky that the agency she works for has retained their nurses for years (although there has been some recent turnover and the agency is instituting cost cutting measures that may impact my access to their 24 hour nurses line) and lucky that the pharmacy that supplies me gives us everything we need to prevent infection. Not every pharmacy that she works with does that.

There are a few things to catch folks up on, but I am not feeling great, so I will keep this short.

The big news is that my Xifaxan arrived from India. This is the antibiotic that should knock back the presumed Small Intestinal Bacterial Overgrowth (SIBO). With any luck, this will significantly reduce my pain, eliminate my need to constantly vent my G-tube and maybe even allow me to get off IV hydration.

I started my two-week course yesterday. Unfortunately, I am venting pieces of the pill out after closing off my G-tube for an hour so I don’t know how much of it I am absorbing. And it is particularly important that this antibiotic reach my small intestine. Which it cannot if it is venting directly out of my stomach.

I had an appointment with my nutritionist this morning and she is going to ask the Stanford pharmacist if I can grind up the pills and put them directly into my J tube. This would guarantee that the antibiotic reaches where it needs to go.

The pill is huge, and pills need to be ground really fine when going into the J tube, otherwise they can cause clogs. I am already fighting potential formula clogs forming in my J tube. I might need to pull out the big guns (the clog zapper) if I get the go ahead. I am also going to price an electric pill grinder.

In other news, things have been getting increasingly unclear with my insurance company. We have been fighting my insurance company over getting an out of network exception for the psychiatrist in the GI department at Stanford for months. I have out of network exceptions for the rest of my care team at Stanford, all based on the same recognition that there are no specialists in-network that can provide the very specific care that I need.

To refresh your memories, my brain misinterprets gut motility as pain. At the suggestion of one of my GIs in New York (so you know this goes back more than a year), I have been trying to transition from duloxetine to nortriptyline to manage the pain. They are both antidepressants that have also found to be effective at managing gut/brain issues.

My pain doctor is not comfortable managing the transition because of my history of depression. Regardless of the fact that I have medication resistant depression, she wants a psychiatrist to oversee the transition. I have seen 3 psychiatrists (2 in-network) that have been unwilling to manage the medication transition because it is above their pay grade.

There is a psychiatrist that is part of the GI department at Stanford that may be willing to oversee the transition. I have met with him, and he gaslit me and was kind of awful and unethical (he told me only halfway through the session that he was recording me–never asked permission and he called my therapist, once again, after telling me, but having never asked) but he is kind of the last option available.

No one at the insurance company seems to know what is going on anymore. At first we were able to get at least a first name of someone managing the appeal, but as of Monday, she was apparently no longer part of the process. I also received a letter denying the appeal, but when we called the insurance company, the appeal was apparently still open.

Yesterday, Damaris had a conference call with the folks who wrangle with insurance companies. They decided that they are going to file a complaint on my behalf to the state insurance control board. They are very confident in the strength of our case. Fingers crossed, that may get us the exceptions we need to get me to January. At which point, everything resets again.

David has been cleared to be weight-bearing, in his boot, to his comfort level. He is down to one crutch and has even managed to run a couple of errands on his own. He still tires kind of easily, and is dealing with some pain from using his foot, but he is definitely healing.

It seems like forever ago that I first reached out to my GI about an increase in pain and venting. The only way for me to communicate with my GI is via the online portal. There is no office to call. And the portal clearly states that it is for non-emergency issues only and that it can take 48 hours for a response. For anything more emergent, there is the ER.

Because my only option is the portal, I can send a message to my GI on the weekend, understanding of course, that their 48 hours for review only apply Monday through Friday. So on Sunday night 3/16, I sent a message to my GI saying that I was experiencing a lot of pain from pressure and was continuing to vent a lot of fluid.

One of my GI’s nurses responded Tuesday morning 3/18, and from there on, the conversation progressed very quickly. By that afternoon, he said that my GI had recommended Motegrity.

Thursday afternoon 3/20, having not heard anything from CVS, I wrote back to the nurse for an update. The nurse said that he hadn’t heard anything more re: the Motegrity from my GI and she was at a conference, so she was only periodically checking messages.

Friday morning 3/21, I get a message back from the nurse telling me that because the Motegrity requires prior authorization, they have sent the Rx to the Stanford pharmacy to have it get the prior authorization, and then, once approved, it can be sent to my local CVS.

So there went the weekend. I called the Stanford pharmacy on Monday 3/24, and they said that since they had just received the Rx on Friday, so that it was their first chance to submit it to the insurance company. They told me to call back in a couple of days.

I called on Wednesday 3/26, and was told that the prior authorization had been submitted, and it was pending with the insurance. I called back Thursday 3/27, and got the same answer. I called again today (Friday 3/28) and was told that the prior authorization had been submitted on Tuesday 3/25, not Monday as I had expected. The insurance company has 24-72 hours to respond to prior authorization requests. I was told that they should have an answer back from my insurance sometime next week. 🙄

To sum up, It has been more than a week since my GI recommended a medication that may help with my pain and venting. Due to a completely lackadaisical timeline, I am still without said medication, and will be until sometime next week.

The consensus seems to be that healthcare is just going to get worse in this country, so maybe I should be appreciating that I am at least getting healthcare?

The worst part is that we don’t even know if the medication is going to work. I was on it before, very early on, and it worked for a while and then it stopped. But that was before the tube and before I understood much of anything. Back then, we were still trying to figure out what was going on and the primary goal was managing the horrific nausea. Now we are asking it to do something else (I think). Anyway, we will just have to see how things work out once I finally get the med in my hot little hands.

If you recall from my last post, it was an exceedingly close call, but I did have my gastric emptying study on March 19th. For the test, I had to eat two irradiated egg whites with two pieces of toast (I was told that it was most important to get the eggs in. Eating the toast was preferred, but I could skip it if I needed to). I managed to get in the eggs and half of a piece of toast.

Then every hour they had me stand in front of a machine that passively read the radiated material as dots of light on a monochrome screen. Over the course of the test, I could see that there was some movement, but it was clear to me that I was not going to be winning any motility awards in the near future.

When I got the results, the gastric emptying study showed–trumpets please 🎺🎺–severely delayed gastric emptying. Which is the same conclusion reached by my Smart Pill test back in June of 2022.

I still don’t know why my GI asked for the test. I do have an appointment with one of her NPs on April 8th. Hopefully, I will have had a chance to see if the Motegrity is doing anything by then. In anticipation of this visit, I have started a symptom diary to see if we can find any meaningful data as to why I can sometimes retain fluids and other times vent them out.

In other news, I am loving the home hydration. It is keeping me comfortable until we can figure out what us going on. It does trap me in a chair for about an hour and 45 minutes, but I don’t mind at all when we time the infusions around Spring Training Red Sox games. Now that the season has started and we are looking at more night games, we may need to revisit that. If we infuse me too late in the day, it will end up making me need to pee in the middle of the night. And trust me, getting up in the dark while managing two sets of tubes can get hairy. So we just try to avoid that if possible.

One last note. I am hoping I may have jinxed myself into getting my PICC line removed. For literally MONTHS, I have been putting off buying a PICC line cover rather than just using the bandnet that the pharmacy sends because we were always “so close” to getting the PICC line removed that it wouldn’t be worth it. It is important to note here that PICC line covers aren’t terribly expensive. It was the principal of the matter, not the cost that was holding me back.

This week I finally realized that the answer to getting all of this resolved was to actually buy a PICC line cover and then based on my own logic, I would no longer need a PICC line. I even doubled down and bought two PICC line covers, each a slightly different style.

Thus far, I have only used one (like the bandnet, PICC line covers are generally swapped out weekly) and like the bandnet, it slips down my arm a bit, so I have to tug it back into place from time to time. But it doesn’t roll down like the bandnet does, which makes it way more comfortable. Do I now regret my own stubbornness? Yes, I do. But I remain hopeful that I have jinxed myself into no longer needing a PICC line in the foreseeable future. Of course, that is exactly what we have been saying all along.

Literally, seconds after I published my latest blog post, I got an email saying that the gastric emptying study is approved! Tomorrow morning, I will eat my radioactive eggs and hopefully we might get some actual answers.

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.