Month: October 2023

This will be a short update. In part, because Xena Malka is noticeably less tolerant of my arm movements than Dancer eventually became, and typing is a bit difficult right now. But also because I am tired from an extended walk around the block and apparently I have to navigate an airport in two days.

At the moment, the whole airport thing feels a bit terrifying to me. So many complicated questions. Assuming I disconnect to navigate the airport (I assume at some point, some security entity is going to want me to disconnect and then I would need to do a flush to disconnect at security–something I would rather have more control of elswhere) I will be denying myself calories just when I need them most. Do I just deny myself the calories or shorten my 4 hour intestinal recovery break?

Normally, I would just shorten my break, but I am currently acclimatizing myself to a whopping 27 mls per hour, up from being stuck at 25 for 5 months. Which means that my breaks are really critical right now. I will just have to see how I am feeling on Tuesday.

There are also the physics questions of how we get 3 carry on suitcases to the gate if I am being pushed in a wheelchair? I am relying on the folks at the airport to have a plan in place for just such scenarios. But I really hope that one doesn’t come back to bite us on the ass.

I also made the decision to leave my cane chair behind because we don’t want it confiscated at security if they deem it not carry-on. It is not your typical cane chair, it is actually a collapsable camping chair that David carries in a handy carrying pouch when we go out for walks. It is much more comfortable and does better on uneven ground than the typical cane chair.

That will limit how far I can walk if there aren’t conveniently located resting spots for me. Obviously we are leaving my transport chair at home. Everything I have every read on the topic says in big red letters something along the following lines:”DO NOT BRING WHEELCHAIRS ON AIRPLANES UNLESS YOU ABSOLUTELY HAVE NO OTHER POSSIBLE CHOICE. THEY WILL GET TRASHED”

I suppose if we really want to get adventurous, we can rent a wheelchair on the other side. Fortunately, our hosts primary prerogative is to get guests to sit in their living room and look at Puget Sound through their windows. So I guess I am well positioned to fulfill their intentions.

This post comes to you with all of the misery that comes post vaccination, as I am suffering the impact of having had my covid and flu boosters. No regrets here, but, I am not exactly comfortable. As always, it is a good reminder of just how much more miserable I would be if I were to actually get Covid or the flu. I will take my masks and my vaccinations, thank you very much.

This time my vaccinations are part of a plan to fly for the first time since The Before Times. Hard to be sure which Before Times I am referencing here because it is not just the first time I am flying since the beginning of the pandemic, but also since I got Etisarap, my feeding tube. Because both bring a whole host of complications.

Covid precautions are relatively easy. We got our boosters and we intend to mask for the trip. No different than our usual practices. We have negotiated with our hosts for them to up their own covid precautions and test before we arrive so that we can stay with them.

I got this far in writing this post before I got waylaid by a UTI. Far be it for me to waste effort these days, so you will just get a bifurcated post. Pre and post antibiotics.

As I was saying, the Covid precautions are pretty straightforward. And we have traveled by car, so I have at least a sense of what packing will look like. Although, everything needs to be more consolidated by air, so we will likely need to buy a new piece of luggage. We actually have plenty of luggage. In storage. But we only brought two carry on suitcases with us because we figured we only every travel carry on only. Well, those days are over.

The first thing is my formula. Because I have yet to get confirmation from my supply company that my formula was approved. I was able to find a way to order my formula directly from Nestle. It has arrived and I am back on the adult formula. This presents me with an opportunity, rather than carry nearly a case of formula with me to the west coast, I am going to ship a case of formula directly to the friends that we will be staying with. That will save some misery because we have a lot to haul with us.

Obviously, I have to travel with more than 3.5oz of liquid. I have filed my notice with TSA and gotten their confirmation. I am not quite sure what this will look like when we actually hit security. But I do know that we are going to want to leave plenty of time for them to be confused by me. Just because everyone seems confounded when they encounter my G/J tube.

David requested a wheelchair for me when he booked us our tickets. There is no way that I have the energy to navigate JFK airport. Speaking of which, how ridiculous is it that we live 3 miles from LaGuardia airport, but we are flying out of JFK which is nigh impossible to get to from here. For clarity, both airports are located in Queens.

That is as far as we have gotten in our planning. I already miss the days when I just threw my clothes and meds in my suitcase and went anywhere. But this is my reality and I have no choice but to own that travel has just become much more complicated for us. I am grateful, however, that difficult doesn’t mean impossible.

Experimenting is over and we have called it. My old formula was the problem. Problem solved, right?

Not so quick. I emailed my new tube GI and asked her to order the new formula for me. She wrote back and asked me how much per day. I responded. And then radio silence. And as of Friday afternoon she has not put in the order. I emailed her, but didn’t get a response. Not that I expected to.

I have finished the sample case of the new formula. So my choices were to either buy more while I wait for the GI to put in the order, or go back to my old formula to wait it out. The answer to that one was simple.

The new formula is a Nestle product. And yes, I have lots of ideological issues with the fact that I am now on a formula made by Nestle. But I also like being a functional human, so I am buying it anyway.

Anyway, I purchased a case from their official store on Amazon. And they sent me the pediatric formula. The formulation is close, but not identical to the regular one, but what else could I do? I am using the pediatric formula.

I wrote in and complained, and I got a refund, but no way to get any reassurance that when I order a second case, I will get the adult formulation. It will probably take a couple of weeks to get my new formula sorted, so I can’t just wait it out and hope. So today, I hunt online for legitimate sources of my new formula.

If all else fails, I can always go back on my old formula. It is not ideal, but it will keep me fed in the interim.

This week I had the last of the GI appointments that Mary set up for me back in June. This one was the fan favorite. Every time someone in one of my Gastroparesis groups asks for the name of a GI in NYC, this guys name comes up. So I figured that I needed to check him out.

He absolutely lived up to his reputation. He is the doctor who knows the most about gastroparesis of any of the GIs I have seen. And he confirmed that I have been getting excellent care. He also suggested that since I have lost my most effective motility medication, I try a very low dose of Erythromycin. The naturopathic doctor that specializes in GI issues and has experience with gastroparesis had previously suggested the same drug. Apparently at that level it functions as a motility drug, not an antibiotic. But even so, my body could get used to it. So I am on a three weeks on, one week off schedule.

And because we weren’t already messing around enough, I recently upped my dose of cymbalta. The lower dose didn’t do much and my brain is still misreading motility as pain.

Let it not be said that chronic illness doesn’t leave you with a full plate; all in an effort to have what approaches a normal day.