Month: October 2022

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.