Author: evaschweber

I have been denying my hunger for as long as I can remember. I would see my peers seemingly mindlessly giving in to this basic human need. But from a very early age, I knew that that carelessness was not for me. My destiny was to practice not giving in to hunger. And I was really good at it.

With decades of practice, I thought that I was a master of hunger denial. And then, back in 2018, I completely lost any appetite. It was just gone. I lost any interest in food. Which was a problem, because without any hunger whatsoever, it can be very difficult to eat. Especially after a lifetime of denying my appetite.

I did eventually figure out that if I exercise A LOT. Like way more than should be necessary, I would be able to eat. As long as I did it with about an hour after exercising. If I didn’t eat by then, then my appetite would disappear again. This meant that I was in really good shape when the pandemic hit and I stopped going to the gym.

I did mention my complete lack of appetite to all of my doctors at the time. But despite the fact that a radical change in appetite is an actual symptom of multiple medical issues, none of my doctors thought it was a problem because I was overweight and not wanting to eat meant that I was losing weight.

Fast forward a few years, I still don’t know if the change in appetite was an early symptom of my gastroparesis, but it had certainly been helpful given that I can’t eat. But recently that has all changed.

All of the appetite that I was missing ‘lo these years has come roaring back with a vengeance. I am now fiercely hungry. I am vampire staring longingly at a pulsing jugular hungry. I am a teenage boy wanting to inhale everything in sight. I am starving.

That last sentence is not an exaggeration. Despite the fact that I have the exact same nutrition pumping in to me as I did last time I was on TPN, which caused me to gain 20lbs. This time, I am dropping weight at the same rate I did back when I was starving. Before Etisarap helped me feed again.

The tag line for gastroparesis awareness is “starving for a cure.” I have never felt the starving part of that so acutely. I am obsessed with food. I cannot stop thinking about it. Unfortunately, thinking about for triggers motility. That leaves me caught in a cycle of pain and nausea. I am in hell.

I have an appointment with my dietician on Thursday and we will see what she has to say. To this point, she hasn’t been concerned about my weight loss. Even though I am down 31lbs since I had to drop my feed to 60%.

This is exactly why I was ok with having some fat reserves. The medical system moves slowly, and I need some buffer to factor in the time it takes to resolve any issue. Last time, it took me losing 30% of my body weight to get a GI’s attention. Hopefully, we will get this resolved before things get that extreme. But it is good to know that I have the weight to lose.

This is a complete 180 on my past perspectives on weight gain. But don’t think that I have magically made peace with my body. I have made minimal progress on accepting how my body looks. But, I have starved with fat reserves and without, and it is SO MUCH HARDER to starve without fat reserves. Starving without fat reserves leaves me in bed, barely able to function. Starving with fat reserves means that I can still mostly live my very limited life.

I’m back, sort of. I have an update further down this post. But first, a post on grief.

Life with chronic illness is filled with grief. Grief over the loss of self, the ability to do the things I once enjoyed, the relationships that this disease has damaged, the isolation, and right now, the inability to eat or drink anything more than a single jellybean or a few sips of water.

G-PACT is an organization that supports people with gastroparesis. They put out this post just before Thanksgiving and it really captures a struggle that is particularly wearing on me right now.

Imagine sitting down to eat your favorite food – the one that brings you comfort, joy, and memories. Think about how much you look forward to it, how it brings people together, how it fills not just your stomach, but your spirit.

Now imagine being told you can never eat it again. Imagine watching everyone around you enjoy meals while you sit quietly, isolated by something as simple (and as complicated) as food. The lingering stares. The well-meaning but painful questions. The trial-and-error of foods that only lead to nausea, pain, or days of exhaustion. The events and holidays you start missing because being around food is too hard, or because you’re simply too sick to go. Imagine losing so much of what once felt normal, and trying every day not to feel bitter, broken, or left behind.

This is life with gastroparesis. Some in our community can still eat a few foods. Others can’t eat anything by mouth at all, relying on tube feeds or TPN to survive. But all of us feel the isolation and the loss in one way or another.

To start, I can’t even read through that message without tears. It triggers a deep and primal grief. Our brains are hardwired to seek food. Newborns know how to find their mother’s teat or breast. I feel a desire deep in my jaw to chew. But chewing triggers gut motility, and for me, that means nausea and pain.

I have been struggling with a deep and searing grief about not being able to eat for a few weeks now. The whole issue is exacerbated by the fact that I am often hungry. Being hungry on TPN (IV nutrition) is not terribly unusual. Just cruel. It seems that the more I am able to get my nausea under control, the hungrier I get. It is like they are on a continuum. And as awful and gut wrenching as the grief is, it is still better than the nausea.

And if the hunger wasn’t bad enough when I am awake, I dream about food. I suffer regrets for all of the times that I didn’t eat because my eating disorder made it impossible. This obsessions with food is a symptom of starvation. Although I am getting full nutrition, my brain has decided that since I am not putting anything in my stomach, I must be starving. Yes, once again my brain is offering exactly the kind of help that I could do without.

This all set the stage for a really terrible, horrible, no good, very bad Thanksgiving. Thanksgiving used to be one of my favorite holidays. First off, it was secular, so there were no defined rituals, no going to synagogue. It involved cooking, which meant that I got to spend my time thinking of menu ideas, going to farmers markets and cooking with friends. The cooking with friends was truly my favorite part. Completely inefficient and super fun.

It has been years since we were able to have a good Friendsgiving. But that hasn’t made me appreciate Thanksgiving any less. And last year, I was healthy enough to taste everything that I wanted to taste. I knew I was lucky at the time and I did appreciate it. A lot. But even knowing it was possible did not prepare me even in the slightest for the searing grief I felt this Thanksgiving. It was truly one of the hardest days of my life, emotionally.

When my father died, I was able to channel my grief by walking. The year after he died, I walked 723 miles. Every morning, I walked 5-6 miles. No agenda. Sometimes I walked alone, sometimes with a friend and her dog. But I just kept walking until one day I didn’t feel the urge to displace Dancer and walk. I had worked through my most acute grief.

I cannot walk 5-6 miles a day. I can’t even craft. It took me two days to write this post. Concentrated effort just wipes me out. Leaving me nauseated, in pain and completely depleted.

That leaves my grief festering without any kind of outlet, which is a bad thing. But I am doing my best, between therapy and acupuncture to deal with it a little bit at a time.

I have so much more to say on this topic, but my energy is waning and I don’t want this to have to be a three day post.

For the promised update:
I have gallbladder surgery scheduled for December 24th. It is scheduled as an outpatient surgery, but my PCP wants me to stay overnight if the surgeon offers it. But I don’t know what is worse, being in an understaffed hospital on Christmas Day or possibly having to go to the ER on Christmas Day if there is a complication. I guess we will just have to see how it goes.

My liver numbers are not where we would like them to be, so we have reduced the hours of my TPN from 12 to 10. Which means that I have switched it from night time to daytime. It continues to be an adjustment. My day is now seriously regimented. I wake up, get hooked up to hydration for two hours. Then we need to hook me up to my TPN immediately after so we don’t have to stay up too late to disconnect me. We are still working on the logistics of navigating other commitments that require us to be out of the house when the switch happens. But we will get there.

Overall, I am very happy with the switch, even if my liver remains unconvinced. TPN makes it really hard for me to manage my body temperature, so I overheat at the slightest provocation. Like my drain bag getting clogged. Which is does all of the time. It is just much easier to react and remove layers when I am awake rather than waking up completely overheated and sweaty. Also confirms my theory that my night sweats were caused by TPN, not hormones.

Ok, that’s all I can do for now.

*Sometimes you just need a flavor, any favor in your mouth other than mouth. or a need to cover the taste of ondansetron–which while critically necessary for managing my nausea, tastes terrible and leaves a lingering taste for HOURS. Jelly Belly jelly beans are much beloved by those of us on TPN because there is a whole lot of flavor in something tiny and easy to digest. Usually.

Again, this is David writing for Eva.

There isn’t a major update, but it’s been a bit, so an update felt appropriate.

Eva continues to ramp up her TPN. She is in the penultimate step to full nutrition. We expect to hit full nutrition Monday or Tuesday.

The process of ramping up TPN (IV nutrition) is, as I think I have mentioned previously, normally done during a hospital stay. We have been able to avoid this by agreeing to make sure that labs happen every day (except Sundays). Two days a week the nurse comes to us to do various things to Eva (change the dressing on the PICC line, change the extensions, take vitals). Four days a week we drive to Novato (about 40 minutes) to have labs drawn there.

Car rides are tough on Eva. the jostling causes pain and nausea. It is tiring for her. Nonetheless, our constant refrain has been, “it’s better than being inpatient.” And it is, massively. But it is also wearing.

Generally, the labs have looked fine. A few numbers are beyond the normal limits in the labs drawn the last two days, but we don’t think they are anything to worry about. We will likely hear more about that tomorrow, and it may involve slight changes in the formulation of the TPN (this is why there are daily lab draws, after all).

We still have no idea what is causing Eva to be intolerant of feeding enterally. The Stanford GI wants an intestinal MRI. We aren’t sure what she’s looking for but are just grateful that she has an idea and a place to look.

Eva is slowly returning a bit more to herself as her nutrition returns. Bear in mind she was on 60% nutrition or less for about 8 weeks, and for some of that time was down to about 10%. She isn’t yet able to go back to spinning yarn–I suspect it will take both increased nutrition for a bit and a bit less pain.

This weekend a fiber festival is happening about an hour-and-a-half from here. Since the summer, our goal had been to get to that festival. It’s not going to happen. That length of car ride is too much for Eva, much less the walking around the booths and exhibits. This is the one future plan we had made in a long time. We needed to abandon it.

This is how we live life: conditionally. We are not crushed by not being able to go to the fiber festival. A bit disappointed, but we always knew something could come up. We don’t plan ahead (except for doctors’ appointments). We can’t reliably plan what next week will bring, much less a random date months from now. And that’s okay.

Eva often says that other’s can’t and don’t understand our life. And that’s true. It is so alien to the way those who are not chronically ill live. I think we do better with it than we would have expected. We are in place of accepting what life throws at us and adapting as we go. But it definitely requires letting go of expectations or plans.

And yet, hope remains. If not this fiber festival, perhaps the next one. Or Eva giving herself permission to buy some extra roving to turn into yarn for when she’s ready. I take walks in the hills surrounding our home and see young bucks thinking mating thoughts. We move forward, wondering what the future holds.

Not much has changed since my last update. Well, all of my ginger arrived. Otherwise, it has been over a month since the norovirus infection, but my body stubbornly refuses to tolerate my feed at more than 60% of what had previously been a reasonably comfortable rate. My GI thinks it is post infection dysmotility. So we are once again trying motility agents.

I tried 0.5mg of Motegrity (we started at 2mg) and once again, my stomach immediately filled with air. That wasn’t going to work. So, at the original suggestion of my pain doc, but with the approval of my GI, I increased my naltrexone to 9mg. At that level, naltrexone not only helps with the pain, but increases motility.

The naltrexone is definitely creating motility and I continue to not be a fan of how motility makes me feel. But this is way preferable to the Motegrity and I really would like to get back to full nutrition, so I am sticking with it for as long as I can tolerate it.

The caloric deprivation continues to mess with me. My nutritionist has set a floor of 500 mls/day (750 calories) and I have been struggling to reach that every day. I haven’t been able to spin in over a week now. Reading anything longer than an article is out of the question. And long form articles are a lot for me. My concentration is just shot.

I miss doing things with my hands and I look longingly (and appreciatively) at the crafty creations my friends post online, and my fingers inch to craft. Following a pattern feels like too much right now. Even a simple one. What I really want to do is take some of my homespun and just start crocheting something. Anything. Crochet is easy that way. But I haven’t finished any of my recent handspun plies, and I don’t know if I have the spoons to go through our yarn stash to find something to play with.

That above paragraph is how I spend a lot of time these days. Daydreaming about things I want to do and then being smacked in the face with my reality that I really don’t even have the spoons to do much of anything besides daydream.

Yes, I am in a dark place and I know it. But have you seen the state of the world? I challenge anyone not to be in a dark place right now? Especially now that I have once again lost what brings me joy.

Rest assured, both of my therapists are aware of my state of mind. Erin, my therapist that I have been working with for nigh on 3 years now, has been here with me before. She knows my frustrations and my limitations. She knows that I am a survivor, and that even if when I get cranky and complainy, I will continue to push (probably a bit harder than would be ideal) to do as much as I can. And that, unlike the last time I was in this state, my spinning wheel is already out and accessible, I have a bunch of fiber on hand, and will be able to start right back up once I get my nutrition back up again.

I have tasked my pain therapist with finding more relaxation techniques for me that don’t involve deep breathing. Deep breathing is painful for me. Actually, most breathing is painful for me. My abdomen really doesn’t like moving. So all of those lovely relaxation techniques that involve deep breathing just don’t work well for me. And focusing on my breathing doesn’t calm me, because it is hard to feel calm when one is focusing on what is causing them pain. But there have to be other relaxation techniques out there. Better she do the research than me.

This coming week is a pretty busy one. I finally have an appointment with a psychiatrist this coming week. This is part of the deal with my pain doctor to allow me to get on the notriptyline to help my brain not see gut motility as pain. The goal now is for the psychiatrist to wean me off the duloxetine without me landing back in the hospital with abdominal pain. It doesn’t seem to have much, if any, effect on my mood, but my pain doctor wanted a psychiatrist to monitor the withdrawal process anyway.

Back to the nortiptyline, I have now been at 40mg for almost 2 weeks and I am definitely feeling a difference in how I perceive gut motility. Unfortunately, I am still feeling it, but it is now more of a vibration than pain. It is now simply uncomfortable. I am willing to call that progress. I see my pain doctor in two weeks (right after Rosh Hashanah), so we will see what she has to say then.

I also see my nutritionist next week. I have had a substitute nutritionist for the past few months while mine was on maternity leave. This will be my first appointment with her since her return. When she left, I was basically weaned off the TPN and getting full nutrition through my J tube. Now she comes back to me struggling to get 60% of my nutrition. Kind of a bummer note to start back up on. But apparently her daughter is adorable, so there is that.

My new CPAP finally arrived yesterday. It is all fancy schmancy and has an app to adjust its settings. The important thing is that it actually works. Although the reservoir is worryingly small. When I used to marathon sleep, I would sometimes have to refill the reservoir on my old CPAP before I was ready to get up. I still sleep a lot, but not that much, so hopefully it won’t be a problem. Fingers crossed.

I am going to interrupt the post I was about to write to complain that my ginger chews, originally scheduled to arrive yesterday, have been rescheduled to arrive September 4th. In fact, according to Amazon (the only place that I have found that sells Prince of Peace ginger chews), they haven’t even been shipped yet.

I checked David’s Amazon account (for some reason, he can get Amazon deliveries to the house, whereas, I can only get them to deliver to our PO Box), and the soonest delivery available was August 30th. I ordered them too, because we can truly never have too many ginger chews in the house.

Ginger chews are part of the holy trinity that keeps me semi-functional. So far, I have yet to try a nausea med (and I have tried them all, trust me) that holds me and doesn’t give me tremors. So I rely on ginger chews and medical marijuana to hold me between doses. And the most effective ginger chews I have found (and I have tried several, although probably not everything on the market) are the Prince of Peace ones.

And for whatever reason, all I want right now are the Lychee flavored ones. I don’t find them as effective as the ginger flavored ones, so I tend to go through them faster. And I am almost out.

We do have enough original ginger chews to hold me for a while. Although I did just order more of those too.

Ok, back to my regularly scheduled blog post.

On Thursday, I tested positive for norovirus. Norovirus is supposed to last 1-3 days. I have been symptomatic going back to at least the previous week when I stopped being able to tolerate my feed at its usual rate. And here I am, almost two weeks later, and I am still only tolerating my feed at about 60% of its usual rate.

My doctor says she isn’t surprised that in someone immunocompromised, norovirus would have a longer run. Fortunately, my IV hydration has kept me out of the hospital. But because we are working without a map, I have no idea how long it will be until I can return to my full feed. And I am feeling the nutritional deprivation. Not only that, I am losing weight. Fortunately, I have fat reserves again, so it is not an emergency. Yet. I see my nutritionist this week, so we will see what she says.

The feeling of caloric deprivation was familiar and anxiety producing. I could feel my executive functioning beginning to slip. And reading has become more difficult again. Thus far, audiobooks and music are still ok. And so is spinning. Although, me being me, I decided now was the time to start spinning my alpaca fiber.

Alpaca is a camelid and the fiber is different than sheep wool. Wool has little hooks on each fiber. That is what allows it to felt. It also makes spinning easier because the fibers literally hook together. Not so in camelids. The fibers just slip across each other.

I checked all of my spinning books and no one discussed how to spin camelid fiber. Just wool. Even though all the books mention alpaca, they just didn’t explain how to spin it.

I am Gen X and I hate learning from videos, so I didn’t even check the internet. I just put my head down and kept banging my head against the problem until I figured it out on my own. I now completely have the hang of it. But if I had had my full executive functioning, I would have waited until I was fully nourished to learn how to spin a completely different kind of fiber. But I didn’t, so I just learned to do it the hard way.

In some ways, I actually picked a good week to be nutritionally deprived because it dulls all of my emotions. And, are you ready for it? My niecelettes are heading off to college on Tuesday (pause for gasps). I know!!!!!!!!!

You might think that having an extended case of norovirus would have been enough entertainment for a couple of weeks, but we don’t roll that way.

A week ago Wednesday morning, while I was setting up my hydration, the clip on one of the lumens of my PICC line broke. The clip is an integral part of the line and keeps me from getting air embolisms. I immediately texted my nurse.

After I hadn’t heard from her for a while, I remembered that Wednesday was her day off and I called the 24 hour nurse line. The home nursing company, in a cost cutting measure, has recently replaced the nurse answering the line with an LPN who has no infusion training. Despite the fact that the home nursing company has infusion patients, including myself.

I texted pictures of broken clip to the LPN. The LPN wasn’t sure how to respond and asked her clinic manager. I got a text back from her just saying that it was fine. But she hadn’t answered any of my questions. Including, ‘was it fine as in, I didn’t need to go to the ER, but I would need to get the line replaced?’ I texted my primary care doctor, but she deferred to my nurse who was much more familiar with these issues.

My nurse, being the dedicated and caring person that she is, responded to me on her day off. She was the one who finally answered all of my questions. If we were any of her other infusion patients, she would have sent us straight to the ER to get the PICC line replaced. But because she had trained David to replace my extensions, he could replace my extension on the broken lumen with one that had a clip on it, which we could use until I could get the PICC line replaced.

But just getting the PICC line replaced wasn’t as simple as it sounds. My doctor sent in the order and I waited to get a call to schedule the replacement. After a day I called the Interventional Radiology (IR) department at the local hospital and they hadn’t received the order. I called my doctor, she re-sent it and I called them back. They still didn’t have it, but it didn’t matter because they didn’t have any openings for me until the following Thursday. So I went back to waiting.

After I still hadn’t heard anything by Tuesday morning, I called the IR department again. They had the order, but were confused. The scheduler had no idea how to schedule replacing a PICC line in the same place. He had apparently been in communication with my doctor, instructing her to change the order. It turned out, neither of them were really clear on what the issue was.

I very clearly explained that the PICC line itself was broken, but that the site was fine. And that yes, I was really was hoping/expecting that the doctor could simply replace the broken PICC line in the exact same track. He put me on a long hold and went to speak with a doctor. He came back and gave me an appointment for Thursday morning.

Thursday morning arrived and an IR nurse brought us back into the depths of the hospital. She remembered me from my previous visit in December, when I got my PICC line moved from my left arm into my right. She looked at my PICC line and tried to convince us that it was fine because we could still pinch the clip closed with our hands. David patiently explained how that did not actually solve the problem while she was texting with the doctor.

The doctor came over, took one look and said that I needed a new PICC line, and that because the placement was fine and there was no infection, he would just slip a new PICC line right into the same track using a guidewire. Which, for those of you paying attention, was exactly what we were looking for before we played a couple of games of telephone and had the conversation with the IR nurse.

Throughout the procedure, I learned just how differently home nursing is from hospital nursing. The nurse who prepared me for the procedure had been an IR nurse for 11 years and had never seen a long extension. That is because long extensions only exist so that patients like myself can hook ourselves up to our infusions and flush our lumens daily. Otherwise, you end up with one T-Rex arm, too short to reach the PICC line. But in hospitals, the nurses do all of that work, so they don’t need long extensions. Also, they seem to have a smaller range of hypoallergenic dressing options. I had to bring in my own and they clearly didn’t know how to apply it. My nurse had to come in the following day to apply a new dressing properly.

The most exciting part of the last week and a half for me is the number of ER visits I avoided. At least one for the norovirus (my long hospitalization last year started because all I needed was a little hydration) and one for the PICC line replacement. Speaking of which, a couple of weeks ago, just days before the clip broke, we celebrated the one year anniversary of me getting a PICC line. Not the one that was replaced last week. I only got that PICC line in December. But I have had a PICC line for just over a year now.

In other news, I get the results of my sleep study this week, so hopefully I will be able to make more progress on getting myself a new CPAP. And hopefully my new glasses come in. My prescription change was actually small enough that I could have gotten away without getting new glasses, but it has been 3 years so I went ahead and got new purple glasses anyway. They should be coming in some time this week too.

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.