Eva's Gastroparedic Adventure

“But the plans were on display…”
“On display? I eventually had to go down to the cellar to find them.”
“That’s the display department.”
“With a flashlight.”
“Ah, well, the lights had probably gone.”
“So had the stairs.”
“But look, you found the notice, didn’t you?”
“Yes,” said Arthur, “yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying ‘Beware of the Leopard.”

Douglas Adams

On October 19th, I reached out to my GI and after confirming the date of the procedure and what the nutritionist and I had decided vis a vie formula, I asked “What I don’t know is whom I should be discussing things like what supplies I need and how to go about getting them.” It is now November 20th, two days away from getting my tube, and I still don’t have a final answer. Here is my story.

On October 20th, my GI responded with this: “Do you know, or can you contact your insurance to find out, with what home care company you can get services? They are often the ones who obtain supplies after we order them.” ​ ​

And that, my friends, is where things start go off the rails.

In order to find out where he should send the order, I started an online chat with my insurance company; as you have to dig really hard to get a number to call. Knowing that my supplies would come under the heading of Durable Medical Supplies (DMS), I asked who should my doctor contact to send in an order. I got an answer, but it turned out to be the wrong one. However, not knowing that at the time, I passed it on to my doctor on 10/23.

After not hearing back, which is unusual for him, I sent a gentle reminder on November 4th. During this time, being me, I am researching everything I can and learning the relevant language. This turns out to be a critical skill. I start playing with formula intake calculators online and discover that I will need to be feeding 30 (thirty) hours a day based on what my nutritionist originally told me I should use back in October. I figure that I am doing something wrong and I email my nutritionist and ask specifically what my formula intake goals are.

It is now November 11th, and I finally get my first correct answer. It turns out that my calculations were correct and therefore we need to put me on the highest calorie formula (1.5 per ml) because between formula and water (since drinking is a miserable experience for me, we are better off insuring that my minimum hydration comes through my tube) I will end up feeding 18-22 hours a day, depending on what rate I can tolerate.

I email the doctor the revised formula Rx and call the office as well because I have not yet seen an Explanation of Benefits on my insurers website. I am told that the doctor faxed the order. I tell them that I sent him an email with the corrected formula.

Eleven days to go and still no answers. I start another chat with the insurance company, where over the course of a couple of hours I get bounced from Specialty Prescription to Home Prescription before I finally get a phone number for Medical. The woman who gave me the phone number also told me exactly what to say. She said to ask for Enteral Feeding.

Turns out, I prefer the chat to the phone because between my various transfers, I had to repeatedly spell enteral. Nobody has the slightest clue what I am talking about. Finally, someone asks for the order approval information. It is then that we determine that there is absolutely no order in their system at all.

It is now Thursday, November 17th and we are down to the wire. I call my GI’s office and ask them to email me the order and I will make sure it gets to the insurance company. Mind you, I still have no idea where to actually get the supplies. It is then that I learn that there is a note saying that the order was completed and faxed in, but there is no order in the system. And, there is no one in the office who knows how to put together an order for enteral supplies. Oh, and they have no clue where I get the supplies. It is the end of the day, I am exhausted and plan to get up early the following morning to pick this back up.

Friday morning, I call the insurance company again, committed to staying on through as many transfers as necessary to get a list of durable medical supplies suppliers. At long last I get a list of suppliers emailed to me. It was clearly formatted by drunk monkeys because the categories aren’t organized by anything I could identify. And categories appear more than once, so I had to go through the full seven pages to get my list.

Hazzah!! Now we are getting somewhere. I call the very first one on the list. I have been working with DMEs for years because that is where I get my CPAP and supplies. I am now feeling surefooted for the first time. It took two transfers before I made it to enteral feeding*. The promised land!

The woman who answers the enteral line is incredibly kind and went out of her way to help me after I told her my tale of woe. We were all ready to set up an account for me, until she asked for my insurance. Turns out that they no longer take my insurer. This despite them being the absolute first on the list sent to me by…my insurance company.

She was still a balm as she talked me through exactly what needed to be on an order so I could dictate it to the staff at my GI’s office to be submitted for me. She also referred me to another DMS that she thought took my insurance. She even gave me a direct number to their enteral department.

It is now Friday afternoon. I am getting panicked, I am exhausted and frustrated and I start to wonder how important actually using my feeding tube is. I remember that I want to have a life, pull up my big girl pants (which were MTV pajama bottoms at the time) and call the second provider. First thing is confirming that they take my insurance. Then I ask if I can still get my supplies by Monday and she says yes. I make sure to get the fax number to send the order to.

I call my GIs office. Talk them through putting together the order and give them the fax number. They need to get a doctor’s signature and she makes a note in my record to call me once it is faxed. I give them an hour. No word. I call the DMS and they have not received a fax. I call my GI’s office and they confirm that the fax was sent, but resend it anyway.

I call the DMS back. They have not received the fax, but oh, by the way, they need between 1 and 3 hours after receiving an order to get it into their system. It is 2:30pm on the Friday before my procedure. I ask how long they are there today. I am told until 8:30pm.

At 5:30 I call them back, they have the order and get me set up as a new client. She tells me to call back next week to speak to the person who actually fulfills the orders. I ask if she is there now and am told, that those staff leave at 5pm. I guess I should have specified?

It is now Sunday afternoon. I am on a clear fluid diet starting tomorrow so my stomach is clear for the procedure. That means that my calorie deficit will be even worse than usual. And I won’t be getting any actual nutrition. Which would be fine except that I need all of the energy that I can muster to see this through to the end.

Tomorrow morning at 9am on the dot, I am calling the person who actually fulfills the orders. It could be a simple call. But based on my track record thus far that seems unlikely. What I do know is that at 8:30am on Tuesday morning, I will get a hole cut into my stomach and they will insert a feeding tube and hopefully, in fairly short order, get to be a functioning human again. I just hope that I get to start using it sooner rather than later. It has been a very long 2 years of serious undernourishment.

*I envision the enteral department being located in the steam pipe trunk distribution venue.

This rage has cost me one night of sleep so I feel extra crappy today. I had hoped to take a shower today, but I am redirecting that limited energy to this blog post instead. The trade off will be worthwhile if I can get some of this fury out.

This article is what started it all. Ozempic, a drug for Type 2 diabetics, is being prescribed off label for weight loss.

Ozempic has become so popular in the last two years because it makes people lose weight fast. It’s so controversial because of the way it works: by triggering a chemical repugnance to food itself. After being injected with Ozempic, a user could try to imagine a moist slab of black forest gateau, or a calorically-dense, half-pound Baconator bacon cheeseburger from Wendy’s, and their body physically revolts, with spasms of nausea and waves of ill feeling. It’s the chemical realization of a behavioral psychologist’s wildest dream; A Clockwork Orange for junk food, an eating disorder in an injection.

When you pull back the curtain on this wonder drug, things get a little clearer.

Trish Wheeler is one of thousands of Ozempic users. For years, she had exercised and eaten right. She’d even been profiled in a fitness magazine. But as she got a little older, and her body transitioned into menopause, she found her usual habits were no longer doing the trick. “Dieting was not working,” Wheeler, 53, says, “and my joints were hurting enough that I couldn’t strenuously exercise anymore”. (ed. Italics mine)

… Ozempic. The treatment has seen drastic changes in Wheeler’s life: fatigue, dizziness and an elevated heart rate.

She says her brain is “running really, really slowly these days”, which makes phone calls and Zooms a little challenging. But she’s lost weight: a reported 47lbs more (21kg) . “Whether due to age or health,” Wheeler says, “traditional methods for weight loss can become less effective, and so far this drug has done a miraculous job overcoming those obstacles”.

This read as awfully familiar to me. And that is because Ozempic’s “magic” side effect is gastroparesis. The magic disease that will beat all of your body’s survival instincts into the ground as you unwillingly literally starve yourself.

.. the same hormone has also been shown to slow down the passage of food from the stomach to the small intestine, which can increase a feeling of satiety by making patients feel fuller faster.

Why sure, there may be some unpleasant ill effects, but hey, you can still lose weight. And that is the most important thing, isn’t it. So much better than acknowledging that our bodies simply cannot do the type of strenuous exercise that we could when we were 20. Starving your body will not reverse that. But it will cause permanent organ damage, but only after incapacitating you with severe hypoglicemia. Not to mention the dehydration and UTI’s that come from not being able to drink liquids comfortably.

Why does this one article make me so angry? I am fully aware that America is obsessed with addressing the obesity epidemic without having to address the actual causes: food insecurity, food deserts and heavily subsidized processed food that forces the low income to eat non-nutritious food because that is all that they can afford.

My rage comes from the idea of being able to stop eating for weight loss still triggers a sense of euphoria in me. Despite two years of starvation, and despite being housebound and increasingly bed-bound, with the papery, fragile skin of someone at least 20 years my senior and my skin literally hanging off my body, That is just how deeply ingrained the message is that it is no holds barred in the fight for thinness.

Over the past two years, my greatest weight loss has come when I have had a series of good eating days in a row. Because my body starts trusting that it will get the nutrition it needs and allows fat to be burnt. When I eat less, that is when my body starts hanging on to every last molecule of glucose. That is what is making me increasingly bed bound. My body is doing everything it can to survive. I am not an anomaly. It is almost a trope in the gastroparesis world. The best way to stabilize your weight is to have bad eating days.

Gastroparesis is different for everyone. Not all of us lose weight. There are also what are called “gainers.” Their disease in mild enough that they can eat only highly processed food which is super easy to digest. Here is the rub. They are still eating tiny portions and are most definitely calorie deficient. Their bodies’ survival mechanism is to hang on to all of the easy calories and they gain weight. Sounds a lot like what we see in food deserts, but I am no expert.

I am getting tired and feeling less coherent, so I will try to wrap this up fairly quickly. I was going to rant that I am still 8lbs above the ideal BMI weight listed in the many health portals that I am now part of. How can I starve for 2 years and not reach a supposed goal weight set by a measure that we have known is meaningless for 200 years? Simply: my body’s survival instinct.

I am fortunate that my GI agreed that I needed a feeding tube. But every day I see people complaining that their GI will not let them get a feeding tube until their BMI drops below 18.5 and they are officially underweight. Or until their labs show actual damage to their organs. That is because we, as a nation, have lost all sense of the importance of feeding our bodies. Even when our bodies are clearly deteriorating in front of our eyes. That subject deserves a rant of its own, but I really am done now.

One last parting gift.

I have said it before, and I will undoubtably say it again, but our medical system is not designed for chronic illness. Instead, we are forced to use our limited spoons to get the support and education we need.

I have been trying to figure out how the whole tube feeding thing works since my GI gave it the thumbs up. I have done my research and spoken to experienced tubies and it seems like we are left on our own to figure things out.

Some background. Connecting the tube coming out of my body to the feeding tube is a bit fussy, but nothing terrible. Apparently, this is all that they may or may not teach me when I get the tube. You know, when I am still hazy from the anesthetic.

Gastric tubes that go right into the stomach come with options. Tubes that go right into the jejunum are limited to continuous pump feeding because the small intestine is a relatively narrow tube without the ability to stretch the way the stomach can. The pump pushes in formula at an adjustable flow rate based on what each individual can tolerate. Depending on the flow rate, it can take 10-18 hours to get in a day’s worth of nutrition.

Folks who can tolerate a faster flow rate can get all of their feeding done while they sleep, although not everyone finds sleep feeding to be comfortable. Most folks just walk around tethered to a backpack that holds the pump and formula. By all accounts, once you get the routine down, the only hindrance that comes with tethered feeding is having to carry a second bag around with the usual crap one walks around with.

The real challenges come with training and troubleshooting. In theory, my insurance company is supposed to send someone to train me how to feed. I have yet to encounter anyone who has had a visiting nurse sent to their door. Sometimes they have gotten links to videos. Usually, they get nothing. Their training has come through trial and error and the wisdom of the ones who have navigated the path before us.

The troubleshooting kinda scares me too. Nobody seems to know who I contact when the tube gets kinked or blocked or shifts in such as way that causes pain. These are not uncommon challenges. What most people end up doing is going to the ER multiple times because it can be hard to spot a kinked tube if you do not know what you are looking for. And most folks in the ER, decreasingly populated by doctors and instead filled with PAs, know how to deal with a kinked tube.

So you are sent home, perhaps after having received some electrolytes and hydration, but certainly without getting the issue resolved. So they call their GI, who sends them to the ER who still don’t know how to deal with a kinked tube. Eventually, after much to-ing and fro-ing with insurance companies, you get an appointment with a doctor who knows what they are doing and get your tube adjusted. but throughout this extended period, one is once again not getting adequate nutrition and is quite possibly in a fair amount of pain and is decreasingly able to self advocate.

I wish I could say that this was only one person’s experience. But I have seen the same story told over and over again, from all over the country. Urban, rural, well-resourced and on medicaid. Other countries certainly aren’t perfect, but they do seem to have a better system in place for these kind of chronic issues because it is a single payer system that has all of your health records in one place.

I am a smart, educated woman who has no problem forcing confrontations when necessary. Hell, I have taken on Sallie Mae and won (admittedly, this was when student loans were still regulated by the federal government so my congressional House Rep had a direct line to people with the ability to make decisions). I am going in with my eyes wide open that there will be problems. But I really shouldn’t have to rely on a peer group to learn how to navigate something as important as feeding myself.

After 10 days at home, I finally made it out of the house this week for early voting. Even though the polling place was well within a mile of our apartment, as usual, David drove me to save my energy. I hadn’t been out in so long that the whole way, I had my nose pressed against the window, like a puppy, just trying to take it all in.

Afterwards, David suggested that we go to Astoria Park. I had been thinking park-like thoughts myself, so off we went. I didn’t have a lot of energy, natch, so we just walked from the parking lot to the river. But even that was exciting as we were swarmed by a flock of pigeons. I kid you not.

We saw some geese swimming placidly in the toxic sludge East River, including some juveniles. We also looked at the pretty pieces of sea glass that pretty much make up the shoreline. The pigeons claws made a lovely tinkly sound when walking over the glass. It’s all great as long as you ignore the fact that it is all trash.

The recovery was a bit rough. That hour or so out and about meant that I spent most of the last two days in bed. Basically only getting up to “eat” and then laying back down again. Fortunately, I am feeling much better today and I am back to where I was before Tuesday. Needing about a hour to recover from at least the first few “meals” of the day.

I woke up early this morning, so I took the opportunity to drink my first few ounces of formula at 6:30am, Which means that at 2:40pm, when I write this, I am just about 30 minutes* from my 4th “meal” of the day. Which also means that this may be one of those rare days where I manage to get ~17 oz. of formula in me, as opposed to my usual 14oz.

Still waiting to hear from my GI’s office about ordering my tube feeding supplies, including a pump and formula. I can imagine that they are simply fighting with my insurance company, having to explain that they can’t just authorize the procedure to insert the tube, but concomitant with that comes approving tube feeding supplies and support. I have emailed them 3 times (their preferred method of communication), but if I don’t hear from them by early next week, I will call them.

That is all the big news, which is good because I am really fading.

*My rule is that I eat every two hours if I can tolerate it. Some days I need more time than that between meals. And of course, if I get hungry sooner than that, I am always welcome to more formula (she types, hearing David’s voice in her head).

I am 3+ weeks away from my tube procedure and I probably used that title too soon because I don’t see things improving before then. For the record, I am perfectly happy to be absolutely wrong in my prediction. But following the general trajectory, I am dubious.

My life now revolves entirely around getting nutrition into me. And my body is struggling with it more and more. My body used to only go into shutdown mode after my first formula of the day. Now it happens for every meal, with the possible exception of my fifth formula of the day.

What that means is that every time I drink ~3 oz of formula, I have to go lay down and let my body deal with the influx. This down period used to last about 20 minutes, but lately it has been closer to an hour.

• Thus my days look like this:
  • Xena Malka wakes me up between 7 and 8am. If I am good, I get up with her, drink some supplement and go immediately back to bed.
  • Wake up again around 10am. Drink some more formula, go back to bed and snuggle with Dancer while I digest.
  • Wander out of the bedroom ~11:30 or noon. Try to catch up on my world for a about an hour until I feel compelled to drink some more formula.
  • Go back to bed and snuggle with Dancer.
  • At this point, it is usually around 3ish. This is probably my heighest point of functionality all day, and I usually let myself slack off a bit and get an hour to think about anything other than eating.
  • Somewhere around 5, I drink a few more ounces of supplement. I am usually ok to stay upright while my body digests, but not always.
  • 7ish, I drink my last portion of formula for the day. I am always almost able to stay out of bed with this meal.
  • 10:30 – Bed time so we can start it all over again the next day.

I can’t always get myself to get up at Xena Malka O’Clock. On those days, I get up between 10:30 and 11 and it is a race against the clock to get just 5 servings of formula in me (a grand total of 14oz, or ~560 calories) because if I drink formula too close to bedtime, it tends to make me feel crappier the following day, but I really can’t tolerate formula more frequently than every couple of hours. And even then, it can be pushing it a bit. So I rely on a clock to make sure that I am eating as often as I can, because left to my own devices, the intervals would be much longer.

If you recall, when my body goes into shutdown, digestion mode, I can’t read, I can’t listen to music, every ounce of my energy is going to my digestion. This is where I am so happy that we are living in a thriving neighborhood, because I can rely on outside sounds to keep what little brainspace I have occupied. Our bedroom window faces a shared airshaft with several other buildings. Within our shared airshaft we have an opera singer, a pianist and a clarinetist. I can occasionally hear street musicians too.

I haven’t been out of the house in over a week. Although next week I will have to leave the house to vote. It occurred to me to get an absentee ballot just one day past the deadline. But there are just some sacred duties that are worth exhausting oneself for, and with our democracy teetering on the edge of a cliff, it is not a duty that I intend to shirk.

It’s not that I don’t want to leave the house. It is just that I spend all of my daily spoons on getting whatever meager nutrition I can in me. And there just aren’t enough left in me for luxuries like showering, or going outside, or increasingly, keeping track of the days.

My BFF’s birthday was last Monday, but the week blurred by me and I only realized yesterday that it was Friday. And then it took me another half day to remember that the Monday in question was not the one coming up, but the one that passed. She has gracefully forgiven me, but the point that my life keeps getting increasingly smaller.

The good news amidst all of this is that after many, many months of looking and 3 therapists referring me to someone with more specific knowledge and expertise, I have found a therapist. She used to run an inpatient eating disorder clinic and has experience with not just eating disorders, but gastroparesis and tube feeding. She had not been taking new patients, but she was willing to have a conversation with me and apparently I was intriguing enough that she took me on as a patient. I don’t know if that is a good thing or a bad thing. What I have learned is that when a doctor finds your case intriguing, it doesn’t often bode well for your current state.

David is off at a very affordable Broadway show, having learned to navigate the theater ticket secrets known only to New Yorkers. I am serious. If you are in the know, keep your mouths shut. 😉 I am rested and recovered from my weekly shower and am going to see whether my energy lasts long enough for me to finish this post.

When I started using A-F grades for my days, I defined C as any average day. Neither particularly good, nor bad. Just average. But since October 9th, I have had a total of 3 C- days. Everything else was D+ or lower. Five of the last 7 days were D- days.

I defined F as needing to go to the hospital for nutrition and/or electrolytes. But I am not feeling that close to needing additional support. Rather, I have been calibrating my days according to the average way I was feeling when I started this tracking system, way back at the beginning of September. Obviously my system needs some recalibration.

My decline over the last 3 months have been pretty regular step downs. A trend that we are hoping that tube feeding will help resolve. But that won’t be a quick process either. I can’t just suddenly start pumping a bunch of formula into my small intestine. That way lies serious diarrhea. It will take time until we get my formula titrated up to a flow rate that I can tolerate. And nobody knows how long that will take.

My point is that regardless of how amazing the tube turns out to be (and there is still plenty of time to get your name ideas in), I am still looking at several more weeks where I can continue to feel increasingly crappier. Which leads me back to where I started. Clearly, I need to recalibrate my C so that I can better capture the space between feeling increasingly crappy and needing to go to the hospital.

I would also like to give myself more leeway this time so that the adjusted rating can last more than a few weeks. I haven’t decided exactly how I am going to achieve that yet. I have some ideas with varying degrees of complexity. After all, I wasn’t an evaluation professional for nothing.

One more thought before I go. I recently read an article by a palliative care doctor who was advising other doctors on how to deliver bad news. The piece that really stuck with me was her suggestion to replace “I’m sorry” with “I wish.” Instead of saying “I’m sorry that you are feeling so poorly” try “I wish that you were feeling better.” I tried this out with our friend DaveGordon this weekend and it actually works really well as a message of consolation. My affect was way more positive after the wish statement, even though they conveyed the same message.

Today is yet another sucky day, after a series of sucky days. I have been setting my alarm so that I can wake up and drink 2.5 oz of supplement and then go back to sleep after I get queasy from eating. Today, I just could not get out of bed. David eventually brought me my formula in bed and then I was able to get up a few hours later.

I have also put a pause on my 2-3x weekly acupuncture. The last two times I have gotten super queasy by the end. And my skin is so fragile that the needles actually hurt going in. One even made me gasp. I mean, do you know just how tiny acupuncture needles are? Like hair width. They should not hurt.

Laying on the table I got the sense that my body is actively trying to heal, but there is just nothing left to spare. Instead I am going to save that energy to maybe do things like post on this blog, catch up my talmud that I am horribly behind in or maybe stop pushing forward the holds on my library books and get to actually read them.

I am planning on picking acupuncture back up once I get my tube. Which I will on November 22nd!!!!! Some of you have asked questions about the tube, what it will look like, will it really be poking through a hole in my stomach (yes) and will I be able to still eat orally (also yes)? I hope to answer some of these questions as soon as I have a reasonably good day.

That brings me to my challenge. I am planning on naming my tube, but I am not feeling at all clever these days. So I am looking to you, gently readers, to put on your punster hats and help me out. It will be a dangler (as opposed to a button, which means that there will be a tube hanging out of my body) so I have been assuming that it is male. But non-gendered, female and gender queer suggestions are welcome. Multilingual puns are encouraged. Ridiculous suggestions like Tubie McTubeface are not.

• To give you a sense of what I mean, here are some options that I have rejected.
  • Tubias Fünke – Tubes don’t wear clothes, so it cannot be a never nude.
  • Tooby Doo – I don’t want to be singing Tooby Tooby Doo, where are you? to my tube because that means something has gone terribly wrong.
  • Tubie Ziegler – I just don’t feel that a mere tube can live up to the standard set by the brilliant, yet very damaged White House Communication Director for which it would be named.
  • Fairlop – I looked at a list of Tube stations and this one stuck out. But it sounded very threatening once I though about it more. Like a bris that has gone just a bit too far.

Anyway, hopefully the challenge is clear. Operators are standing by.

Recently, David pointed out that I only posted on good days and that was skewing my description of life with Gastroparesis (GP). After a week of pretty damn horrible days, I am finally up for writing this post. I apologize in advance if it isn’t as coherent as my usual writing, but this is me on a more typical day that you have probably seen so far.

I rate my days on an A-F scale (also at David’s suggestion). An A would be a day where I have multiple hours where I forget that I have GP. An F means going to the hospital for nutrition and/or electrolytes. Last week I had my first two D- days. I also learned an important lesson.

Last week was an incredibly social week without much buffer in between for me to recover. Socializing takes a lot of energy for me. To start, I am deeply introverted. That doesn’t meant that I don’t like to socialize with people. I do. It means that I need some alone time to recover.

Then there is the fact that I am taking in about half the calories I need for my body to function. And taking in those calories is very uncomfortable and uses up a fair amount of energy on its own. I also struggle to balance my increased need for sleep with making sure I get my nutrition in me. Things only started turning around when I started waking up to eat and then going right back to sleep.

Lastly, I also pull together all of my resources when I see people. I don’t do this for you, I do it for me. When I see people I care about, I want to be present for them. And that takes the most energy. But without it, I would be completely tuned out and unengaged. And for that, I could stay home and save the energy. Bottom line? If I see you, even if it is not for as long as either of us might like, I still have to use my energy wisely.

This past week, I overestimated by abilities and it cost me fairly dearly. I don’t regret my choices. This weekend was not busy by design, it just turned out that way. But the lesson I learned was that I need to schedule 2 or 3 recovery days after seeing folks.

Here is just a peek into my busy week. Saturday I had breakfast with my in-laws and family friends. I spent the remainder of the day in bed in what I rated to be a C- day. Sunday was also spent primarily in bed and got a D+ rating.

Monday, we celebrated my brother’s birthday in the sukkah. I had rebounded a bit from the last day and a half’s recover time. So it scored a C-. Which, is a fairly typical mediocre day for me.

The following morning we once again met up with my in-laws, David’s aunt and uncle and a family friend. I crawled into bed once we got home and only emerged for acupuncture. The treatment was what saved that day from being a D- day.

A second acupuncture treatment on Thursday could not save it from being a D-day, although it did make me more comfortable. Friday was another D- day. Yesterday things started looking up and was a D+ day. And today is trending towards being a C- day.

When I have bad weeks like this one my life gets reduced to the absolute bare minimum. Sleeping, eating, saying hi to David and the cats occasionally. Rinse and repeat. I only checked my phone a couple of times to day to see if there was anything urgent that couldn’t wait. And I haven’t had the energy to shower in a week. I am really hoping that today is the day that I can finally pull it together enough to get clean.

Next weekend we have a good friend coming in to town. He knew not to suggest a meal, but he suggested a walk. I explained to him that everything came at a cost. If he wanted to make the most of my energy, I suggested we hang out in our apartment masked, with the windows open (weather permitting) and/or a HIPA filter and play games. We can go hang out at a local restaurant outside, but then I will get exhausted just that much more quickly and the recovery would cost be just a bit more.

I continue to be optimistic that the feeding tube will help my energy. My pre-procedure appointment is Wednesday and I am hoping we can get the procedure scheduled quickly after that. Then I just have to learn how to feed myself through a tube sticking out of my gut.

However much as I am looking forward to getting some more of my energy back, the miserable symptoms of GP will still be with me. I will continue to be subject to the whims of my body for the rest of my life.

Yom Kippur starts this evening, and I am still trying to wrap my mind about recognizing that fact. Yom Kippur is the holiest day of the Jewish year and entails a 25 hour fast, with neither food nor water. The day is traditionally spent in the synagogue in prayer, contemplation, learning and the occasional nap.

I have observed Yom Kippur in Orthodox, Conservadox, Conservative, Reconstructionist and Reform communities. The message at all of them has been the same. If the fast will be detrimental to one’s health, it is a mitzvah not to fast. However, one is not discouraged from recognizing the fast in other ways. This is where my head has been the last few days.

I contemplated limiting myself to my formula and electrolytes and not eating anything solid. Arguably that would still be detrimental to my health. Granted, 4 saltines with jam may not add up to much calorie-wise, but how can I, someone scraping by on less than my body needs for basic metabolic function, give up even those meager calories? Clearly, putting any limitations on my eating is a no-go this year.

But that still leaves me without a way to feel Yom Kippur this year. Especially since it will all be over Zoom for me. Quick call out to SAJ, the congregation that has welcomed up to NYC with open arms, for holding Covid-safe High Holiday services, requiring proof of vaccination and N95 masks to attend in person. As one of those in need of a little extra protection, I am incredibly appreciative to their commitment to making their space one that is safe for everyone, not just spiritually and emotionally, but physically too.

I joined SAJ over Zoom for Rosh Hashanah, and they did an excellent service that worked well as a hybrid model. This is high praise, as a former synagogue ZoomMaster, I am acutely aware that that is way easier said than done. Trust me.

I expect no less from their Yom Kippur services. But there is something about not being in community for Yom Kippur that just feels wrong to me. The liturgy on Yom Kippur is all about taking collective responsibility for wrongs, slights and oversights that we, as a community, committed over the previous year. My cats may be able to list my many failures as a human, but as deities in their own minds, they are certainly not going to join me in the Ashamnu, the confession that is recited multiple times on Yom Kippur.

SAJ has a tradition of everyone wearing white for Yom Kippur, which is my custom too. I even allocated some of our very limited closet space in our apartment to my Yom Kippur clothes, knowing full well that they would only be worn during a single 25 hour period. But is my sartorial choice enough to make me feel that it is the holiest day of the year? Probably not.

One of the recurrent themes of the High Holidays is our lack of control over our lives. And if Gastroparesis has taught me anything, it is that I can plan all I want, but the timing of my bad days and good days are only very marginally within my control. This year, Yom Kippur may just have to fall short of expectations. My kavanah or focus, this year is going to be on accepting that which is out of my control. Definitely not a strength of mine, but working on it sounds like a good way to spend Yom Kippur.

This week’s mail has just been a bundle of calories. First the 1.4 formula of Kate Farms arrived and then the calorie-packed Benecalorie finally showed up. It had taken a detour through Plattsburgh, which is why it took so long to get to me.

The 1.4 formula is just a tiny-bit more viscous than the regular formula. But it feels like it is much heavier than that. I also noticed that on days when I only ate the 1.4 formula, I wasn’t eating any solid food because the formula kept me so full all day. One might say that just sticking to the 1.4 formula is the best bang for the buck from a caloric perspective, anyway. Just skip the solid food.

However, my nutritionist recently introduced a new mind-blowing (and I am not saying that facetiously) concept to me. And that is eating for the sake of pleasure.

I come from a family where all food had its own valence. I don’t remember a time when every bite wasn’t weighted with the “dire” consequence of gaining weight. When I was 16, it all came to be too overwhelming. I stopped being able to distinguish “good” foods from “bad” foods, and I just stopped eating at all. Even today, with gastroparesis, my first response to stress is to stop eating.

One of the weirdest, and certainly most ironic, aspect of this disease is how it has shifted my perspective on calories a full 180°. Calories, in any form, are now universally good. After a year and a half, I am still not used to it. Yet eating remains fraught for me. I expend a lot of energy every day doing my best to get as many calories in me as possible without overwhelming my body and rendering me essentially non-functional. And that doesn’t factor in the nausea that comes with ingesting anything (more on that in a moment).

With that background, you can hopefully understand why the prospect of eating for pleasure was so foreign to me. Nevertheless, my nutritionist’s point resonated with me instantly. This disease has taken so much pleasure from my life. I haven’t been able to craft since that one good day. And a formerly very much anticipated delivery of my fiber subscription just made me sad. For me, eating solid food no longer has much purpose for anything but pleasure. So please be clear, solid food is not going away unless my body (please body no, don’t do this) tells me so.

Tomorrow, after I finish my open container of 1.4 formula, I am going to go back to the original formula and see if integrating the Benecalorie goes better.

Today my acupuncturist asked me to describe the nausea I now get from drinking anything. I had explained to him that it felt different than my standard, with me all the time nausea. That is when I realized that just as any good Oregonian would immediately understand the difference between a mist, a drizzle and a sprinkle of rain (at least before climate change started really messing with our seasons), I had come to learn that there is more than one descriptor for nausea.

There is my “always there” nausea. This is the only nausea that ever goes into sleep mode. But it is always there, lurking. All it takes is brushing against my abdomen, lifting my leg at the hip (like to sit) or the pressure from elasticized or clingy clothes to wake it right up. Then it unrolls like a spiral outward, starting from roughly where my stomach sits. Think pinwheel spinner.

The nausea I get after I swallow a sip of liquid, is like a lead ball being dropped into my gut. Immediately following, like a splash, a curtain of nausea rises from about my belly button to my solar plexus.

Then there is the “oops, I ingested too much” nausea. This one can only be triggered by eating solid food. It takes about 20 minutes after I eat something before I can feel how it will sit in my stomach. I have gotten pretty good at guestimating what I can handle. Sometimes, I guess wrong and eat more than my stomach can handle. Then I feel a pressure pushing down from about my solar plexus to my bellybutton. And that nausea flows down, like when you put a lid on on overly full pot.

Vomiting is common with gastroparesis, but fortunately it is a symptom that I have been spared. My personal, not run by any medical professional theory is that I don’t vomit because my stomach muscles are too paralyzed for reverse peristalsis.