Month: September 2023

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.

Mary managed to get me an appointment with a neurologist for this coming Thursday. This was no mean feat. She couldn’t find me an appointment with one that accepts my insurance at all. When I told her we would pay out of pocket, she found only one who could see me so quickly. She said that she has never seen such a dearth of provider appointments. Everyone else was scheduling into October and beyond.

It was a similar story with the psychiatrist. There we had less time pressure, but no one takes my insurance. So once again, we are paying out of pocket. For context, we get our health insurance through the ACA, off of the New York State Health Exchange. We have the best insurance plan that the exchange offers.

The tremors are slightly improved. But my jaw is sore and my tongue and mouth rubbed raw. They are also agitating in general. A few days ago, I was so agitated that I snapped at David about them. Xena Malka immediately looked at David accusingly. To be clear, David did absolutely nothing wrong, nor did he warrant me snapping at him. But apparently I left Xena Malka with the impression that he had done something horrible to me.

After we calmed her down and made it clear that everything was reasonably alright, David and I walked down to the convenience store to get me some gum. The gum was David’s brilliant suggestion. It keeps my mouth busy and therefore keeps the tremors away. Turns out for tremor management, Dentyne sugar free cinnamon gum is the way to go. I was not paid for that endorsement.

I already had an appointment with a new GI scheduled for this coming Tuesday. One of the appointments Mary made way back in June. It actually comes at a good time as I am now no longer on my primary motility drug and I don’t know where we go from here. My uncommunicative GI was characteristically silent on the subject.

Some of you may have also noticed that Rosh Hoshana starts Friday night. So we are just packing the week absolutely full. It took a long while, but I finally decided which service we would Zoom in to. It is nice to have so much choice, but it is truly getting wearing to not have been to High Holidays in person for so many years. I am missing the prospect of people watching folks in all of their high holiday finery. Honestly, I am mostly just missing the people.

But this is not the year. I already know that I will not be able to make it through the whole service. That will just be way too exhausting for me. For those not in the know, Rosh Hashanah Services can go as long as 5 hours, although the ones I go to generally run closer to 3. Regardless, that is a lot of attention span for my poor, nutrition-starved brain. So I will just be doing the highlights. But I am a huge fan of the rabbi and I am looking forward to getting the parts that I can.

I know folks are going to be anxious for updates after my two doctors appointments. We will have to see how quickly I can get them up given how packed the week is. I will do my best, but it may just have to wait until after Rosh Hashanah.

It has been a while since my last post. Unfortunately, chronic illness can be boring. I spend my time sleeping, being bored out of my gourd (but not in a creative, let’s build a space station kind of way, but in a I’m bored, but too sick to think or read or do anything interesting kind of way), being a good girl and drinking my formula and most importantly, spending time with David and the cats.

Apparently, even boredom abhors a vacuum, so here we are, with another update.

After several cancellations, I did finally see the nutritionist. She is good. She got the extent of the impossible puzzle we are in when it comes to my nutrition. She suggested that we try a new formula. The formula I am on is the absolute best, but anecdotally (and she was very clear on that word, which won her points with us), she has seen patients have abdominal pain with my formula.

For reasons that defy logic, almost all tube formulas have soy and or dairy, both of which are common allergens. I am allergic to soy, so she was able to narrow the choices down to a single soy-free peptide formula. Unfortunately, it has almost the exact formulation as my current formula, but it is worth a try. She is trying to get a sample from her sales agent so we can see if that makes any difference in my ability to increase the rate of my pump.

Additionally, she suggested that I try a protein rich soup in addition to my formula to get my calories up. David dutifully made me two containers of soup, just in time for a heat advisory. The soup is waiting patiently in freezer for the outside temperature to drop below soup temperature itself. Then I will add that to my daily intake as my stomach allows.

I have now been on 60 mg of cymbalta for just over a week. I am definitely feeling it enter my system, because some unwelcome, but familiar, constipation has returned. I am, however, still struggling to move my pump up from 25ml/hour to 26 ml/hour. I was able to white knuckle it for 14 hours, but when I woke up in the middle of the night and unable to fall back asleep, I finally gave it and switched it back down to 25ml/hour.

As anticipated, the psych nurse practitioner in Plattsburgh that the Stony Brook GI put in charge of managing the cymbalta has fallen down on the job. Mary is on the job trying to find me an actual psychiatrist to manage my medication. She hasn’t been able to find someone with explicit knowledge of the gut/brain connection, but she has found me one that has experience with chronic health issues. We are calling that close enough. She is working on getting me an appointment.

All of that would make a reasonable enough update, but hold on to your hats folks, because here it where it gets exciting. I have developed mouth tremors.

Turns out that mouth tremors are a rare side effect of domperidone. Domperidone is my most important motility drug. It has exactly one alternative that not only doesn’t work for me, but has lousy side effects, including depression. The anxiety-inducing impact of developing a rare side effect of my most important medication when I have a chronic disease without cure or treatment cannot be overstated. Turns out, anxiety exacerbates mouth tremors. Who knew?

My uncommunicative GI told me to go off domperidone immediately for 48-72 hours and asked if I had seen a neurologist. I responded that I had not and what would happen at 48-72 hours. In response I got the name and the number of a neurologist who is scheduling months out.

Just a quick timeline here. I wrote to the doctor about the tremors on the Friday before Labor Day. He did not get back to me until Tuesday. Today is Wednesday, and I have been off the domperidone (and the tremors are continuing) for 24 hours. 72 hours is Friday. He does not work Friday. So once again, he is forcing me to wait an additional 3 days an answer about my most important medication. Something he offhandedly acknowledged in his original reply. Mary is seeing red and intends to start calling his office Thursday morning until I get some kind of response from him. We also both acknowledge that his ultimate response may remain useless.

Now we get to add a new doctor to my stable. Mary very quickly found me a neurologist who could see me next week. But before Mary could ever update me on the appointment, I got a call from the doctor’s office cancelling the appointment because that doctor doesn’t deal with facial tremors. Who knew neurologists were so specialized? Mary was particularly pissed because that particular doctor’s website explicitly says that they deal with tremors of all kinds.

So that is where I find myself now. Twitching away while Mary works her magic for me. I remain immensely grateful for Mary, because I could not be doing this research myself right now. Not in my nutritional state.

I want to add a grateful thank you to those of you who have been checking in on me. I may not always be up for responding right away, but I appreciate the messages immensely. They make a huge difference for the state of my mental health. Thank you.