Author: evaschweber

There has been so much going on, I have barely had a moment to catch my breath, let alone blog. So this post is chock-full of updates.

As the title suggests, there was an unexpectedly good week of doctor appointments. Which was surprising, because I expected the first one to be unreasonably expensive in terms of my pain to benefit ratio. That is because the first one was in person and 40 minutes each way.

The first appointment was with the doctor who was looking into whether my back pain was stomach-related or musculoskeletal, like my “gallbladder” pain had been. I had seen the results of the MRI and so had my pain doctor, and it looked like the results showed nothing beyond what one would expect in a middle-aged person. So I was fully expecting suffering through a drive for a doctor to tell me that the pain was my stomach and therefore, not his department. But instead, he made the whole trip completely worthwhile.

Apparently this doctor reads his own images. And what the radiologist described as a small cyst, was not actually very small. And it is sitting right on a nerve. And in a such a place that it is likely responsible for at least some of the pain I am experiencing. But then he made me appreciate him even more. He referred me to a neurosurgeon, not because I need surgery, but because of the placement of the cyst on a nerve, which makes addressing it outside of his wheelhouse. I truly appreciate doctors who are aware of their own limitations and refer accordingly. My appointment with the neurosurgeon is June 2nd.

The second good appointment was my long-awaited appointment with the motility specialist who is in-network. My insurance will no longer grant me the “access to care” exception to cover my Stanford doctors* as in-network because more two years after Mary first tried to get me an appointment with this doctor, she is now accepting new patients. Including me.

This motility specialist self identifies as a neurogastroenterologist, which is a perfect match for me. She had reviewed my medical history, including the testing that I haven’t been able to do because I can’t ingest 1,500ml of fluid and get it into my small intestines for a MRI enterography (MRE). I also updated her on the work I am doing with my naturopathic GI to address the bacterial overgrowth in my small intestines and trying to restart tube feeding at a very slow rate.

She said that she saw two different directions that I could go in, I could continue to pursue options to get the MRE or I could focus my efforts on getting back to tube feeding. Then she asked which direction I wanted to go in. Without hesitation, my answer was to be able to resume tube feeding. And with that, I became her patient.

The next step is for me to have an hour-long appointment with my new GI’s assistant, who is both a registered dietician and either an NP or a PA, neither David nor I can remember which. That appointment is May 26th.

That was all two weeks ago. This past week has been both a trial and a triumph.

The trial is all related to my efforts to try Motegrity for I think the 4th time since being diagnosed with gastroparesis. And each trial has resulted in me and David deciding that the pain it causes is not worth it because neither of us can see any benefit at the dose I can (barely) tolerate. And this time, it resulted in me losing ground in the amount I could flush into my J tube.

Motegrity is one of the only two motility meds that work on the small intestine. I am already on the highest dose of other one. As one of my GI’s in New York told us, the small intestine is boring. Nobody studies it because there are so few meds that work on it. So I am sure that I will be trying Motegrity again in the future. But for now, I am off it so I can resume beating up my small intestine with flushes and soon, watered down formula.

Yes, Triple Tube Girl is about to become Quadruple tube girl. This is getting to be too much, even for me.

Starting some day this week (I am hedging my bets, because I am needing to rebuild just flushing bile salts and water twice a day after the Motegrity experiment forced me down to just one flush a day) I am going to restart trickle tube feeds with watered down formula. But, of course, the formula needs to be separated from the bile salts. And this is where my life becomes a word problem.

If I am starting trickle feeds at 4 hours, and the formula needs to be separated from the bile salts, either one hour before the bile salts or 4 hours after. What time do I need to start my trickle feeds so that I can continue to put my xifaxan and bile salts through my J tube at 2pm? The timing of the xifaxan and bile salt flushes are largely determined by their separation from oral meds, so that timing is pretty fixed.

But wait, there’s more. I still need to run my TPN (IV nutrition) for 10 hours and my hydration for 2 hours. And there is only one me, and I cannot wear a second backpack on my front. I also need to factor in backpack capacity. Add in that I cannot pick up anything weighing more than 10lbs with my right arm because that is the arm with the PICC line in it. It is also my dominant arm. Practically speaking, I can run two pumps at a time, but not 3.

Last, but certainly not least, is that I now have to manage tubes going to two different locations on my body. When I run my hydration and TPN at the same time, at least both tubes go to my PICC line on my upper right arm. But when I run my enteral feed, that goes to my J tube which hangs down from the center of my body at about belly button level. As I discovered when I trialed running water through my enteral pump while running TPN, wrangling tubes going to two different places when putting on or removing a backpack is a special kind of fun. Plus, I have my free-hanging drain bag to manage on top of it all. I have never needed a prehensile tail/third arm more than I do now.

Truly, I have not been able to wrap my brain around what we are trying to pull off. Instead, I have been using my newly required brain space (thanks to the transcranial magnetic stimulation) to come up with other ways to get myself into trouble. Setting goals.

Setting goals is especially difficult when dealing with a chronic illness. I want to push myself forward, but I also need to recognize that there are days when my body will just not be up to doing anything. I also need to recognize that I need recovery time from doing almost anything. Whether that be playing a mindless game, reading (!!!!!!) or going on little adventures.

Nevertheless, I had set a goal of being able to go to a local fibershed event this past weekend, located about 30 minutes away. It was the perfect sized outing for me. There were only a few booths, scattered throughout gardens with dye and medicinal plants. And there were sheep and goats and alpacas and a ruminant with fantastic horns. It was too far away for me to be able to determine if it was a sheared sheep or a goat. But did I mention the horns on that thing?

I had very determinedly decided beforehand that I was not going to buy any fiber because I have enough waiting to be spun. I don’t need anymore. I am sure you can guess where this is going. In my defense, how cool is natural indigo dye? This vendor was selling dye plants along with her fiber. And I don’t recall seeing processed natural merino in colors other than white before.

At another booth, I just missed out on some gorgeous black and white fiber. The vendor gave me her card and told me to call her because she had plenty more at home. Turns out I had purchased fiber from her before and had kept her card because I wanted to be able to order from her again in the future. She is also located only about 30 minutes away from us. She invited us to come see her sheep when we pick up the fiber that I was interested in.

Clearly, our little adventure was a winner! But it wasn’t enough for us. On the way home, David stopped at a plant sale and picked up a couple of varieties of tomatoes and a couple of varieties of cucumbers. It was a little hard seeing starts for so many vegetables that I love to eat. But I got through it and by the time we got home, I was too exhausted to think about anything.

Today is largely a recovery and rebuilding day for me. I am writing this while David is off picking up pots for his new vegetable starts. I am cautiously optimistic that we are on an upward trajectory. But I am superstitious enough that I am following that thought with a “p’tui, p’tui, p’tui.”


*While it has become apparent that my GI at Stanford is not a great match for my needs (although I can appreciate that she is a leader in her field, my idiopathic gastroparesis make me an outlier among outliers), we will continue to pay out of pocket for my amazing pain doctor. And the jury is out on whether we keep my dietician. It all depends on how good my new GI’s dietician is.

Another overdue update. In my defense, both David and I are exhausted. I have completed my 6 weeks of TMS, so we no longer have the burden of the daily trip 30 minutes, each way.

However, we segued right from daily trips to San Rafael to working on getting me up to flushing 90ml in my J tube 3 times daily so I could start my Xifaxan and treat my severe Small Intestinal Bacterial Overgrowth (SIBO) and Intestinal Methonagen Overgrowth (IMO).

I am now in my second week of flushing my xifaxan 3 times daily, which means that David gets to play alchemist, as he grinds my Xifaxan into a powder, mixes it with an aqueous solution and sucks it up into a syringe for me to flush. Yet another one of those skills neither of us ever anticipated him developing.

David and I both expected me to start feeling better fairly quickly. We were both wrong. It remains a struggle to get my meds and bile salts into my J tube. I may have been beginning to see some positive results, but then I added 0.25mg of Motegrity into the mix to stimulate my gut, and that remains really uncomfortable for me. But I am continuing to take it in the hope that eventually we will be able to coax my small intestine into moving again, because I really want off the TPN.

A note on my loathing of TPN (IV nutrition). TPN is amazing and life saving and absolutely critical. But it also tastes terrible. My TPN infusion lasts 10 hours and I now run it during the day. Despite what I am about to say, I cannot imagine going back to running TPN overnight. When I lay down while running TPN, I immediately have a hot flash. And I used to wake up multiple times in the night, coated in sweat. I sleep so much better now that I run my TPN during the day. Giving up naps is so worth a good night’s sleep.

TPN runs directly into my bloodstream and as the day goes on, the taste gets stronger and stronger, until it fills my tongue and every one of my taste buds can taste it. And I can feel it in gums and my soft palate. And since it is in me, it is kind of inescapable.

Regular TPN, which I run 5 days a week, tastes bitter and unpleasant. But the lipids, which run the other two days, are simply awful tasting. The lipids are a combination of soy, olive and fish oils, and they taste just as good as you might imagine. And by the end of the day, I usually want to crawl out of my skin.

Some of you may know that I have a soy allergy. It is a common allergen, but there are no lipid blends for TPN without soy. I watched a great webinar this past year on the history of TPN . It was invented in the late 60’s and tested on beagles, but really came into its own in the late ’80s . I also now understand why there are no blends without soy — they tested lots of other plants oils, but soy just worked best across all categories — but it is an allergen nonetheless. Fortunately for me, it is a mild allergy, but it does mean that I feel like crap the two days a week I run lipids. That is on top of the horrible taste.

I can cover the bad taste for a couple of seconds by eating or drinking something with flavor. But I can only tolerate tiny bites or sips and not very much of either. And I can only tolerate one or at the most two hard candies a day because sucking stimulates motility, which still hurts, so that is what limits me. And I avoid eating or drinking during the hour after I take oral meds because my stomach drain is closed off (to give my meds their best shot at being absorbed).

The rest of the time, I just have to find ways to distract myself from the awful taste. But by evening, when the taste is at its worst, I am physically and mentally exhausted and it gets harder to not get distracted by the terrible taste.

I do remain (somewhat) hopeful of beating back the SIBO and IMO and being able to go back to enteral feeding. This is the first time in a long time that we are getting the meds into my small intestine. And those colonies have had at least a year to get themselves well established. That is why after the two week course of 3 times a day flushes, I continue to flush the meds into me once daily for 42 days. Hopefully, that will knock out the buggers.

For the moment, we both remain exhausted and just a little frustrated. And I have a case of Treatment Fatigue. It’s bad enough that I even want to skip acupuncture. But I don’t because acupuncture helps me as much mentally as it does physically. And my acupuncturist has figured out a needle combination that keeps me from having hot flashes while I lay on her table.

I have a rescheduled appointment tomorrow with an in-network motility GI that I have been trying to get an appointment with for a couple of years. But instead of eager anticipation I just feel…wiped.

Truth is, we both desperately need a break from my body. Preferably on the Big Island of Hawaii. Turns out it doesn’t work that way and my body would insist on coming with. And I have travel limitations because of my TPN and PICC line that we are not up to coping with. So we continue as we are.

We are very overdue for an update, but we just have been running so hard that neither of us have had time to actually write anything. Even now, I am just grabbing a few moments between my weekly nurse visit and therapy.

The good news is that the Transcranial Magnetic Stimulation (TMS) is working. And it has indeed made my life easier to bear. The daily trips to San Rafael are exhausting and still cause me pain and we still have a couple more weeks of treatment, but we are definitely getting there. I have learned a lot about how to make car trips a bit more bearable. Which is good because I have an in-person appointment at Stanford and that hour and a half drive has historically been really hard on me.

The consistent acupuncture is also helping me a fair amount. When I first started with this acupuncturist, my body was just completely opposed to anything that wasn’t just basic support. For example, if my acupuncturist tried to improve my motility, my body would respond negatively (either with pain or nausea) and she would pull out a specific needle or two and I would immediately feel better. But with time, my body has become generally more receptive and she has been able to help keep me consistently more comfortable.

I have had a couple of significant appointments since my last update and I am running short on time, so here is the Reader’s Digest version.

I took two Small Intestinal Bacterial Overgrowth (SIBO) breath tests. One orally and one through my J tube. I was fairly confident that my previous tests had not adequately captured what was happening in my small intestine and I was right. Even though my last course of treatment was only a month ago, my oral test came back positive for SIBO. More importantly, the J tube test showed both severe SIBO and was positive for Intestinal Methanogen Overgrowth (IMO). IMO is the overgrowth of the bacteria that produce methane in your small intestine. Methane gas has no odor, so you need a breath test to diagnose it. Methane can seriously slow one’s small intestine, so that is a big result given the difficulty I am having getting my small intestine to move.

Speaking of my small intestine’s dysmotility, it appears that very little of what I take in orally actually gets into my small intestine. It stay in my stomach until my stomach vents it into my drain bag. Unfortunately, that includes medication. It is kind of necessary that I be able to flush meds into my J tube. But right now, my small intestine is barely tolerating the 120ml of bile salts that I flush into it daily. Some percentage of those bile salts reflux into my stomach and out into my vent bag almost every day.

I am still waiting for the med that will address the IMO to arrive. Fortunately, that med only requires a small volume of liquid to go into my J tube. I am hopeful that I will be able to do that 3 times a day, if not immediately, then within a day or two. My hope is that a few days of that will allow me to start doing the more serious flushing I will need to do to get the xifaxan directly into my small intestine via my J tube.

Unfortunately, xifaxan is not available as a liquid, and compounding pharmacists don’t work with it because the ingredients are too expensive in the US (this is one of the meds I get from a Canadian pharmacy because it is obscenely priced in the US, and fairly reasonably priced in every other developed nation). But we have instructions and aqueous solution to turn xifaxan into 60ml of liquid that I can flush directly into my J tube. That needs to be followed with a 30ml flush to ensure that all of the meds are out of my tube. So, it will probably take some time until I can get a minimum of 90 ml in my J tube 3 times a day. But once I achieve that, I am hopeful that resolving the severe SIBO and IMO will allow me to get off TPN (IV nutrition) and go back to enteral feeding through my J tube.

In addition to treating the SIBO and IMO, I am going to be trying 0.25mg of Motegrity taken at night. That is half the dose that I tried previously. And the reason I am trying it at night is because that is when your bile runs through your small intestine to cleanse it while you sleep. The hope is that improving my nearly nonexistent motility in my small intestine will also help reduce the bile refluxing into my stomach. Apparently, bile is never supposed to be in your stomach. Your primary bile duct pushes bile into your small intestine and when it gets to your terminal ileum it is reabsorbed and recycled before it hits your large intestine.

I learned that important fact and so much more in Dr. Steven Sandberg-Lewis’ book Let’s Be Real About Reflux. Not only did I not know that bile doesn’t belong in stomachs, neither have any of my previous doctors. Whenever they see me draining bile, they just dismiss it like it is normal. It is not how our anatomy is designed to work. Anyway, I have read so many medical articles about gastroparesis and intestinal dysmotility and SIBO and not one of them have explained how the gut works as clearly as this book has. Even if you don’t have reflux and just have a basic interest in how your insides work, I highly recommend this book.

Ok, this post got longer than I intended because I picked it up again after I finished therapy and found myself trapped under a cat, so I just kept typing. Last, but certainly not least is that baseball is back to help us decompress. We watched Spring Training and a couple of the World Baseball Classic games, but we missed NESN’s coverage and are glad to have our usual broadcasters back. I still don’t quite understand how I became a baseball fan in middle age, but what can I say, David has had a good influence on me. 🙂

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.