Eva's Gastroparedic Adventure

We have been back from the west coast for a week and I feel like…something bad. That is how badly I am feeling. I have lost my metaphorical skills. At least temporarily.

Seriously, the nerve pain that the cymbalta is supposed to be managing is back, and has been plaguing me for days now. This could be blowback from the travel or it could be a random flare. Doesn’t actually matter because either way, it is disrupting my sleep.

I have a call into my doctor (the new, more responsive GI) and am waiting to hear back. My guess/hope is that we change anti-depressants and the magic starts working again. And hopefully soon , because my tube is scheduled for replacing on Friday.

I know I have been particularly quiet lately. Part of that is the impact of travel on me. We went to the West Coast for a week and that wiped me out for the following week too.

Then things were nice and quiet so I started increasing my feed. This involves anywhere from 2-3 days when I am in pain and out of it, followed by a day or two of feeling ok before starting the process all over again. But it is paying off. I am now at 38 mls per hour.

As a reminder, the highest I have ever been was 54ml per hour and that was nearly 7 months ago. And it was not my goal nutrition rate. It was just as far as I had gotten in my upward titration.

In fact, my GI doesn’t even know what my target rate is because I have just never reached it. The target she ultimately chooses in consultation with her nutritionist will include allowing me to drop down from feeding 20 hours a day to feeding 18 hours a day. Which my jejunum will appreciate. But I probably won’t learn that number until I see her next given the speed at which I am going.

Speaking of my GI, Etisarap is getting a new look. On February 2nd, I am getting my tube replaced with one that will need regular changes every 4-6 months. My current iteration will reach a year in February and that is its general lifespan.

Going forward, with this new style of tube, my tube changes will be able to be done without anesthesia by the interventional radiation department. Nope, I didn’t know such a thing existed either. And yes, I am damn grateful that I have Mary to navigate how to get those swaps done.

In other news, we went to visit my in-laws in Boston over Christmas where we tested my limits and, well, wiped me out for the following week. Next week, we are heading off to the Bay Area to see family and friends. But we are getting to be more strategic and extended the trip to give me some recovery time in the middle. We will see how that works out.

My brain is ever-so-slowly beginning to catch up with the additional nutrition, but instead of doing something useful like allowing me read or knit, I am just getting emotional waterfalls that I am not yet equipped to deal with. So I have periodic meltdowns about things over which I have no control. Not the funnest way to spend an afternoon.

That is the short and the sweet of it. I am planning/hoping to start posting more regularly again, even if they are just short posts. But I know that will be a struggle even as I write this. Travel just truly takes it out of me. You probably won’t hear much out of me until I have recovered from the Bay Area trip, but I will try.

This has been a busy week. I broke up with the uncommunicative GI because I now have a new motility doctor whom I see next week. It was a mutual parting, as I got the sense that he was not unhappy to see me go. Regardless, it is done.

I finally had a follow-up with the neurologist about my MRIs and he deemed me fine, but with an aging neck. Fair enough. Since we had the car out, we drove to our favorite kosher bakery and got sufganiot (jelly donuts) for Chanukah, as well as enough treats to literally last us a month!

And if that wasn’t enough of a day, that evening, we went to a Chanukah candle lighting at Athens Park, surrounded by statuary. Please take a moment to appreciate the irony.

Anyway, I also walked a fair amount (for me) that day, going to and from the garage and I walked part of the way home from the park. I was exhausted the next day, but seriously, Go Me!

I have also started walking stairs on the days that I don’t go outside, unless I feel really crappy, then I listen to my body.

In some ways, it feels counterproductive to me to expend calories on exercise when I am barely just beginning to scrape by with something nearing a sustainable daily caloric intake. I wonder what I am trading off. But I think the movement is important and after two years of this shit, my muscles have definitely atrophied a fair amount. So I walk what feels comfortable that day. Sometimes more, sometimes less. But always trying to push myself just a little, but not too much.

The big news of the week was that my niecelettes turned 16!!!!!!!!!! I have so many Feelings about that. The important thing is that they are impressive young women (eeek!) who have so freaking much to offer the world. I am super proud of them and love them so much.

The following day, Facebook, in its infinite wisdom, showed me a memory from 16 years ago, of Natalie on the day she was born. Exactly my thought. What a journey from such a tiny newborn to the woman she is today. This Sunrise Sunset Moment has been brought to you by Facebook.

I haven’t been up to posting in a while. First I was recovering from our trip. That took a while. Then I really started seeing the benefit from the Nerva hypnotherapy and the Cymbalta.

The pain that has been a constant presence for the previous 6 months had quietly moved into the background until it just faded away. If you have even mild IBS (what it is labeled for) or gastroparesis (what I used it for), I cannot recommend Nerva enough. Available on both the Apple and Google app stores. Worth the $149 and the 15 minutes a day. Truly.

With the motility pain gone, it was finally time to see if I could start increasing the speed on my pump. In just a few weeks, I have gone from being stuck at 25 ml per hour, where I had been for months. I am now up to 33ml per hour. And based on how I am feeling today, we will stay here for another day or two before I am ready to increase to 34ml per hour. It is slow going. But, it is progress.

My body is responding by storing all of those new calories because I am gaining weight again. I don’t know for sure that this is the case, but I think it is the cymbalta. I gained a whole bunch of weight when I went on it the first time.

I am almost up to 1,000 calories a day. Sadly, since so much is going into storage, I am not getting the benefit of those new calories. I remain stuck in limbo where I can only knit a couple of rows on really good days. I want more functionality. But wanting is not enough to make it happen, so I will just have to go back to radically accepting my reality and go back to being patient.

December is a month of GI visits, as I have appointments with 3 of them. Including my tube GI. I am planning on asking her again about when I am due for a tube swap. I am not eager to get rid of the one I have. We have a working understanding and it doesn’t cause me undue pain. But it feels like it may be getting a bit worn out. I would rather plan a tube swap than wait until the tube flips or there is some other emergency. We will se what she has to say.

…and jetlagged. So today’s post will be comprised of a bulleted list of facts in no order whatsoever.

• It was beautiful.
• The PNW will always feel like home to me.
• There were many birds. Notably Buffleheads and Bald Eagles.
• We saw a sea lion taunting birds with a fish in its mouth. Presumably trying to upgrade its meal from seafood to fowl.
• Their trees had better colors than ours right now.
• It was exhausting.
• Not so exhausting that we aren’t already discussing our next trip.
• Our friends harvested delicious Eva-sized apples from their trees.
• We were sent home with apples in many forms, including sauce and chutney.
• It was really nice to get to hang out with good friends for a week .
• It was a relief to be able to hang out indoors without having to mask up (we followed agreed-upon covid safety protocols prior to and during our visit).
• We had an amazing time.
• Xena Malka is making me end this list now because I abandoned her for a week and she needs her scratchies now please and thank you.

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.

Hold on to your hats folks. This is a pretty big deal update. The change in formula has been absolutely transformative. I am on day 4 and I feel like me again.

I spent an hour knitting yesterday and a half hour knitting today before I decided to write this post. And that was after running out to the pharmacy alone (David is feeling under-the-weather from a med change), where I made two additional stops and walked a couple of blocks. Which was after an hour and a half long telemedicine appointment.

David even said he felt like he had his Eva back.

The transformation has been like night and day. I was even able to up my feed to 27 for a few hours.

It is possible that this is a coincidence and I just hit a new nutrition threshold. So after a week or so of the new formula, I am going to go back to my old formula for a bit just to be sure. But the amount of progress I have made in just 4 days has me thinking that I have a formula change in my future.

I have already met with my nutritionist and she is totally on board. I will be sad to give up the easy supplemental nutrition of drinking my formula, but I have also had the best couple of eating days these last two days. Which means that with some careful pre-planning and understanding that some of my food will inevitably go to waste, I might be able to maintain good nutrition even as I ever-so-slowly increase the speed of my pump.

That’s its for now from the very rarely heard from Good News section of this site.

Rosh Hashanah was very nice. David found me a round challah, even though he had to dig for it. The services were very well done, with a major yasher koach to Rabbi Kelilah Miller for an extraordinary job. She is a fabulously talented musician, and I would recommend checking out her music on Soundcloud. To top it off, we even bumped into the local Conservative synagogue at the park yesterday where they were doing tashlich.

Now back to our regularly scheduled medical update.

Tuesday’s appointment with the GI was In the Heights, and arriving there was a total nightmare. Ambulances were double parked pushing their gurneys with people on them through a lane of traffic into the hospital. Fortunately, they have valet parking because David was thrilled to be able to hand over the keys and make them deal with parking. All in all, it was 4 hours door to door, with only 45 minutes of that being my time with the actual doctor.

The doctor himself was good. Just a bit of background. I originally had an appointment with a different GI at Columbia. But when Mary sent in my chart, the practice switched me to their gastroparesis expert. So there really is no one better at Columbia.

The doctor had clearly looked at my chart before he came in to meet with me. And it was nice to have an actual conversation with a doctor about the mouth twitches. All of my exchanges with the non-communicative GI on the subject had been on email over the portal.

As expected, there was little the new GI could do for me. He concurred that I am now off my most effective med for good. And there aren’t any other magic pills or procedures waiting in the wind. He made a minor adjustment in one of my other motility meds and made some suggestions for the psychiatrist if the cymbalta doesn’t play out as we hope. And, and this is a huge and, he would want to discuss that with the psychiatrist. This guy is clearly a team player. Something I have desperately been searching for.

David even asked explicitly who he has covering for him when he goes on vacation. he said that he has people that he refers his motility patients to when he is out of the office. So no more waiting through 4 days weekends to get any kind of answer out of a doctor. I’m sold.

I do have one more appointment with a potential GI in October. That one is a fan favorite in my gastroparesis groups. I am keeping that appointment just to be sure. But for now, I am comfortable with who I have.

The neurologist was a very different story. Let’s just say that there is a reason that Mary was able to get me an appointment with him so quickly. He did his residency in Staten Island. For you non-New Yorkers, Staten Island is truly the red-headed stepchild of New York City’s 5 boroughs. And thanks to “What We Do in the Shadows*” I can only hear it said in Nandor the Relentless’ voice.

Clear disparagement aside, the neurologist was comfortable that since the mouth twitches are continuing to dissipate since I went off the medication, there is no serious time-sensitive emergency. He ordered a couple of MRIs of my brain and C-Spine which I am getting done this coming Thursday. He also referred me to a movement clinic, which Mary is working on getting me scheduled with.

Also coming up next week is an appointment with a psychiatrist who will be working with my GI on the gut brain issues. That sums up my medical life for now.



*What We Do in the Shadows is a brilliant mockumentary series on Hulu and has done more to raise the esteem of Staten Island in my mind than anything before it.