Month: November 2022

I got so distracted by introducing Etiserap and Yipbarri that I forgot to give an update on how I am doing. Several of you asked after me, which made me feel very loved. Thank you for that.

It has been 8 days and 6 feedings since I got my tube. I am now up to 750 calories a day in formula. I am eating even less since the tube, but I would bet that I am still getting 100 additional calories a day or so. Something clicked in Monday afternoon and I have started feeling like a vestige of myself again. And I still have a long way to go before my formula fully titrated up, which means that it should only get better from here.

There is a big caveat though. Increasing my caloric uptake is mostly a wonderful thing (I will explain that qualification in a bit), but we always knew that it would not do anything for my gastroparesis. I have had a couple of bad gastroparesis days this past week. They are much easier to bear knowing that I will not need to force any lead formula bombs into me just to ensure some degree of nutritional intake. I am still having to drink 20 or so ounces of electrolytes a day until I reach a point where I can get my necessary hydration through Etisarap. That makes my bad days just bit worse, although I see a clear light at the end of the tunnel.

The tube feedings have been going very well, even if titration is going a bit slower than we had hoped. Last night we also realized that given the volume of my daily formula intake, in just a few days I will no longer be able to sleep 12 uninterrupted hours without doing a flush and switching feed bags. Long term, I may not end up needing as much sleep. But we are not there yet.

I have encountered some unexpected bumps in the road as I slowly regain my Eva-ness. I still have no resiliency, but I am beginning to feel feelings that my body has just not had the capacity process for almost 2 years. I feel the feelings but without the capacity to process or contextualize them. My therapist has been incredibly helpful with this transition, but they are absolutely exhausting.

Someone in one of my chronic illness groups recently mused on how many other health issues we are forced to deprioritize because our chronic illness takes up so much of our energy. That was a timely observation because I am about to run out of my thyroid meds. My thyroid numbers have been all over the place for the past couple of years. Whether it is because of the serious weight loss or the malnutrition, I don’t know. I had been postponing dealing with the issue until I was fully titrated up and my TSH levels had an opportunity to stabilize. But my hand was forced by my inability to get refills for just a couple of months. I do have an appointment with an endocrinologist next week, so we will see what she has to say on the matter.

I have been meaning to make the big reveal on what I have named my pump and tube for several days now. It has just been a week since I got my tube, although it has felt like much, much longer than that. Everything is going fine, there are just new patterns to learn and new habits to develop. The This t-shirt spells out the various steps, although I think the t-shirt is useless because if I needed a reference point, the words would be upside down to me.

But that’s not what you came here for. I am sure that you have all been waiting with bated breath (if so, please exhale now) to learn what I have named my tube (aka my front tail) and my pump.

This is actually a big reveal for everyone because the names I had originally settled on have changed. I went into my procedure last week with names for both my tube and pump in mind. But it turned out to be a wise move not to share those publicly, because they have both changed. The names I had picked were simply wrong for both.

I didn’t get there on my own. Paul Anderson gets full credit for helping me understand this distinction. In his words:

Imagine you have an alien parasite burrowed into your belly and it adorably thinks it’s hiding despite its tail hanging out. It’s a confused parasite from a mirror dimension. That’s why it’s hiding.

Paul Anderson

I love the idea of having a little confused alien burrowed into my belly. Its like I have a helpful friend in me all of the time. The only part I took issue with is that my tube is not a parasite. A parasite feeds off its host. But my little alien friend feeds me. It is not a symbiote either, because to be fair, the relationship is very one sided. My new friend is the direct opposite of a parasite, and her name is Etisarap. For those wanting a little more explanation, Etisarap is parasite backwards. I don’t know if her species has gender, but she seems to be fine with me using female pronouns for her.

It is a dictionary of Wagiman, a people and language group who traditionally dwelled in Australia’s Northern Territories. The word for Joey in Wagiman is Yipbarri. Thus my pump’s name is Yipbarri.

DaveGordon gets an honorary mention for coming up with the original name for the pump: R2ube/D2ube. Obviously, I took some creative license with the spelling.

I also want to take a moment to appreciate those who submitted their ideas. Your offerings included puns, drag queen names and philosophical humor. Clearly my friends know me. And I consider that to be a Very Good Thing.

Just a quickish update because I am on my 3rd day of minimal nutrition. Starting with the phenomenal news, I am now, at long last, doing my first feeding!

But all was not lost. Yesterday, I spent an hour+ Facetiming the supplier’s nutritionist. She did a great job showing me how to use the pump AND answering a huge list of questions that I have been collecting for over a month. She was also appropriately horrified and appalled that my GI’s office released me into the wild without any training. 

The combination of the lesson, having my questions answered and having the tube placed means my shoulders are the furthest from my ears than they have been in a long while. 

Next up, I will share the names of my tube and pump. But right now, I am going to uncharacteristically save my little remaining energy and watch some dumb sitcoms.

“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).