Eva's Gastroparedic Adventure

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.

We are back from our travels, and it is nice to be home. But Dancer’s absence remains a keenly felt hole in my heart. I feel like I am letting his memory down by not giving him the tribute he deserves. But I am so exhausted and numb I don’t feel like I could give him his proper due. I still can’t bring myself to look at pictures of him. So it will be a bit longer until I share the wonder that was Dancer with the world. I don’t know if the tribute will be worth the wait, but he certainly was, given that we didn’t see him for the first few weeks he lived with us. But that is a tale for another time.

We have learned that travel is possible, albeit a bit bulky, given how many medical supplies and redundancies that we have to pack. This most recent trip I forgot one of my pain medications. Fortunately, It was one that did not have any withdrawal symptoms. I left it behind on a Saturday and I didn’t hear back from my palliative care NP until Monday. I don’t seem to be any worse for the wear for not being on it, so that it one med that I can strike off my list.

I had been trying to wean myself off all unnecessary meds when I found myself suddenly needing to add several, so this is a small victory. Speaking of meds, I have now been on 30mg of Cymbalta and I think (hope/wish) that it may finally be working. We tried upping my feed from 25 ml/hour to 26 ml/hour overnight while we were in Lake Placid and I didn’t wake up in tears. But I was still white knuckling it. David didn’t think I was getting any more nutrition than I was spending gritting my teeth through it. So I returned my pump speed back down to where it had been.

I want to try increasing my pump speed one more time before I meet with my psych NP on Wednesday. If I can’t pull it off, I think I am going to concede defeat and go up to 60 mg of Cymbalta and see if that does the trick. I am beyond ready to start the long, slow slog to full, or at least, adequate, nutrition. Based on my previous experience, I was only able to increase my speed by 1 ml/hour every 3 days. So even if I succeed in my experiment, it will be months before I get back to a sustainable level.

I am drinking 1/3 of a container of the 1.4 formula at least once a day regularly now. And I am getting two servings in more than half of the time. That gets me to 1,100 calories, which does make a noticeable difference in my brain processing power. I am so depleted, the impact is short lived, but it is certainly an incentive to keep pushing it in.

The combination of the added exhaustion from the travel and my malnutrition has left me really bored. Sit coms have become too much. I can watch short clips of humor on YouTube and that’s about it. I can barely read anything of consequence. I am even struggling to watch baseball when I get tired. It is all just so cognitively overwhelming. Any and all content becomes an overwhelming noise in my brain that just exacerbates my exhaustion. I loathe it.

My appointment with the nutritionist was rescheduled to tomorrow. So hopefully she will help me come up with a feasible and sustainable plan to keep upping my nutrition. I can’t think of anything more than keep drinking my formula, but what do I know. Regardless, it will be nice to speak with a nutritionist who has experience with enteral nutrition.

I am in no shape to be writing this update. I am exhausted, in pain and my heart is broken into little bits. But there is news, so I am posting.

Quick update. For anyone who missed it, we came home from the Berskshires to a very sick Dancer, my much beloved cat of 13+ years. He left this world at home, in my arms, Sunday afternoon. He deserves a memorial post, but I am not yet ready to write it. Everything is just too raw right now. Given that we are heading to Lake Placid for a week with the other side of David’s family on Saturday, it may be a while. But he will get the tribute that he deserves once I am feeling up to it.

The Bershires went much better than expected/feared, but since we literally walked into an emergency at home, I have neither processed nor healed from that yet. Possibly more on that another time.

The real update is that I have medical news to share. After some to-ing and fro-ing my Stony Brook GI finally got in touch with my psych nurse practitioner who supervised me going off my psych meds. They have agreed to start me back on 30mg of Cymbalta to see if that works. I took my first dose yesterday.

Amidst the loss, I managed to pull off my 15 hour fast and SIBO test yesterday. David went into Manhattan for me to drop off the completed test. Results will take 5-7 business days. So we settle in to wait for news.

I have an appointment on Thursday with the nutritionist that the traumatizing GI referred me to. This nutritionist has experience with tube feeding, which makes her, in my experience at least, a bit of a unicorn. I am looking forward to having a conversation with someone who gets nutrition, but I am also anxious given the circumstances.

We now have both the original 1.0 and the 1.4 formula at home and I have been supplementing my nutrition orally. Occasionally I get fancy and can drink two servings in a single day and gotten in as many as 300 extra calories in me in a single day! But even the extra 150 makes a difference.

Of course, nothing involving my tube can be easy. When I tried to order my monthly allotment of formula and supplies, my supplier told me that my formula is backordered until the end of September. They offered me the option of ordering the 1.0, which would drop my caloric intake by a third, or get an Rx for another formula.

The problem with many other formulas is that most of them have soy. And with me being allergic to soy, that makes them a poor choice. There are a few formulas without soy, but I don’t know if they have a 1.5 peptide option. Basically, it wouldn’t be an easy switch.

In retrospect, the following is something that I could have had Mary do for me, but I didn’t know that I was about to fall down into a rabbit hole. Hang on folks, this is where it starts to get weird.

I called the formula manufacturer, a company I have been ordering directly from for over a year now, to see if they have any of my formula in stock. When I told my tale of woe, I got transferred to their customer advocacy team. I once again, relayed my tale of woe and, once again, and they said they would call me back.

They did and told me that they had spoken to the sales team who assured them that the next time I ordered my formula, it would be in stock. I explained that that time was now, and I had just been told that they were out of stock until September 25th, which is why I called them in the first place.

They said he would call the sales team again. Shortly thereafter I got a call from the supply company telling me that there had been a miscommunication (although carefully, not an apology) and my order would be shipped tomorrow. I am still kinda holding my breath until I get the shipping notice from my supplier.

Tuesday, I had my appointment with the traumatizing GI. Fortunately(?), I had seen my family on Sunday and I was still exhausted and my dysautonomia was in full swing. Not even my anxiety could get my blood pressure up much. My blood pressure was just 98/63 in the office. Think about what your blood pressure looks like when you are anxious! That was the best that I could do.

The traumatizing doctor’s demeanor was much more chill this time. But she still didn’t know what to do with me. Like my main GI, she is also supportive of the Stony Brook GI’s theory that my issue is a brain/gut issue and supports the anti-depressant approach. Still no word back from the Stony Brook doc though.

But basically, this GI’s field is enteral feeding. And since my body isn’t actively deteriorating from malnutrition, I am not her kind of patient. She made it clear that she is not the GI that I am looking for. In fact, she doesn’t believe the kind of comprehensive GI that I need exists. Apparently no one specializes in motility AND PEG tubes AND nutrition.

But, she is willing to be a peripheral part of my team and my tube doc. For me, the most important part of the appointment was that she referred me to her Registered Dietician, who does specialize in enteral feeding. even though I am still stuck, she can at least help me with longer term goals, assuming that I can ever get my pump speed up.

Speaking of which, I think the small intestinal bacterial overgrowth (SIBO) is back. The pain in slowly increasing again. I had almost a week of stability after I went off the xifaxan. But since then, it has been a steady decline.

We picked up a SIBO test from my GI’s office while we were in Manhattan on Tuesday. However, I cannot take the test until I have been off the antibiotics for 2 weeks. So I am looking at Saturday at the earliest. Unfortunately, David needs to then bring the completed test back to Manhattan for analysis. We are leaving for the Berkshires on Monday, so it will be a week before David can bring it back anyway.

I am of two minds on the test. Part of me wants to take it right away just to get it done with. But I have to be fasting to take it, which means losing about 12 hours of nutrition. And no pain meds the following morning or during the 3 hour testing period. Regardless of when I take it, it won’t be a pleasant experience. So, it’s not like I want to rush in.

I have been eating less because of returning pain, so I finally gave in and have started supplementing my nutrition by drinking formula again. I was incredibly resistant to doing so, and started sobbing just at the thought of it. My therapist suspects that the sobbing is residual trauma coming out. But I have been pushing through and I can now get a glass of formula with just a few tears, so my efforts to just push through the tears seems to be working.

The original idea had been to use the oral formula to increase my caloric intake. Because the returning pain means that I am eating and drinking less, the formula is just replacing the 100 or so calories that I was ingesting already. But it is a start. And my hope is to slowly increase the amount of formula that I can get in orally. Pain-willing, of course.

The plans for the Berkshires are continuing afoot. Yesterday, the cat sitter came by to check her keys (it has been over a year since we used her last) and to get the updated routine. We are continuing to add to packing lists and there is now a pre-departure to-do list.

Despite everything that needs to get done, I am doing my very best to take every opportunity to rest. Every little thing just takes so much energy from me. As always, there is a lot that David can do for me, but when it comes to my health (including packing up my medical supplies) he still needs my brain to help. And those little consultations seem to add up and exhaust me. But we are doing our very best to have me in the best shape possible for our Berskhires adventure.

Twenty-five years ago today, after a particularly pleasant bike ride home, and a lovely time in the backyard with Viktor Chenomyrdin (my beloved departed diplocat), David and I agreed to meet for tea. The rest is (a lot of) history.

I have to admit that I have probably spent more time thinking about this anniversary than I have about any of our previous anniversaries. Life is frought and difficult right now, which makes me acutely aware of how much David and I have successfully navigated together. It also makes me particularly appreciative of having David by my side.

We both have a slack attitude towards anniversaries. Our basic take is that it is important to appreciate each other every day of the year and not to wait to pile it on any given day. There have been years when we celebrated and years when we both totally missed the date and only remember a week or so later. When we did eventually remember, we wished each other a happy belated anniversary and move on.

This year I really wanted to recognize the commitment and dedication to each other that started with some pots of tea a quarter of a century ago. This is a particularly difficult year to try to celebrate anything, but it is also a year that we need the recognition.

David threw out some ideas, but they all had their own issues. We aren’t really sure how the travel thing is going to work out yet and navigating me to theater seems daunting. Not to mention not being sure that I am up for an entire show yet.

David came up with the winning idea. We would go to an 80’s cover band’s performance in the park. With a picnic. Actually, that last one was my idea. I may not be able to eat, but I love picnics.

Thursday, I had an appointment with my non-communicative GI. Nothing came out of it because we are essentially waiting to see what my Stony Brook GI comes back with. Anyway, we were a little worried about my energy. I wasn’t feeling great. But I was determined.

As expected, I perked up a bit when I disconnected from my feed at 6pm. My best hours of the day are the 4 hours when pumping my feed into me isn’t causing me pain. The concert started at 7:30 so we had plenty of time to get ready.

As we started to gather our stuff, I realized that because I was free from my pump, I wouldn’t have my trusty, rusty backpack with me like I always do. That was a weird realization. My pump backpack has fused with my being. But I persevered. We just packed the picnic blanket, some snacks, some lighters (we were going old school at this Bon Journey concert!), etc. into a different backpack.

There was a good sized crowd when we got to the park, but we found a perfect place to put our picnic blanket. Turns out it was behind another family with a transport chair. There was another a few folks ahead of that. Clearly I had found my assisted mobility crowd!

While the band was tuning up, David asked if I wanted some ice cream. I said yes, and he ran off to the well-placed ice cream truck that parks right next to the park’s great lawn. David came back with his usual cone for him with a spoon for me. Then we waited for the show to start.

It was a beautiful evening. The temperature was perfect, the sun was setting over the East River and there was a strong sense of community on the lawn. I was happy.

The band had clearly played a ton of b’nail mitzvahs because they knew how to lure the crowd to the stage. A crowd that was largely way too young to be OG Bon Jovi or Journey fans, but they had the energy to rock out. We also learned that lighters are really an indoor thing because they kept going out when we waved them. That and the lead singer told people to pull out their phones for certain songs. Personally, I don’t think it feels the same.

I spent almost all of Friday in bed. And Saturday wasn’t great either. In fact, this morning hasn’t been perfect. Apparently I rocked out a bit too hard at Thursday’s concert. But I don’t care. It was truly worth all of the misery because it was an absolutely perfect way to celebrate 25 years with the person whom I love the most and is the center of my ‘verse.

Yesterday was my long awaited appointment with my GI at Stony Brook. It was a 5 hour exhausting adventure and the only stop we made for was gas. But it was well worth the trip.

The doctor was an hour late in seeing us, but that was easy to forgive as soon as she sat down in the exam room with her. There was no sense of time pressure, not even when we were interrupted three times by nurses. Her head was clearly entirely in the room with us.

She started by noting that she had seen my most recent labwork and that I had seen her friend at NYU Langone. Friend was her term. Not colleague. Her friend is the GI known around here as the traumatic doctor. At first, I sidestepped that story by simply saying yes, and starting with my “I need nutrition now” pitch.

That didn’t go well. She said that my labs were unremarkable and that by all objective indicators, I was ok where I am now. She further explained that what I needed was a motility specialist with an understanding of nutrition, and that [the traumatic doctor] was a much better match for me than she was. She has some experience with PEG tubes like mine, but she is not a motility specialist.

My stomach clenching uncomfortably, I went on to explain how my visit to her colleague had been very traumatizing. And that my therapist is opposed to me going back to see her. I told her that I do have an appointment for the 25th, but that she is clearly not a good match for me. FWIW, the Stony Brook GI did comment that she remembered that I had an eating disorder. I haven’t seen this doc in over a year. Kudos to her memory.

Anyway, David stepped in around this point and explained that while we knew that she might not be the most appropriate GI for me, we were there because she was the last GI who had actually listened to me. She got teary, I got teary, it was a minute or so full of emotion. And then she sat down to work.

True to form, she listened like no GI has listened to me since this whole saga began.

At first, she wondered aloud if it is an issue of intestinal spasms. She suggested trying an anti-spasmotic, like dicycloamine to see if that helped. But then she equivocated because it also slows down motility, and that is the last thing she wants for me.

But then she picked up on something else. The pain is triggered right when I eat, drink or flush. Way too soon for anything to be reaching that far down. She asked if I could trigger the pain by thinking about or smelling food. I said yes.

Apparently there is a neurobiological process where your whole gut readies itself when you get ready to ingest something. That is what I am feeling. Only for me, my brain is misinterpreting the motility in my lower gut as pain. She is the second doctor who has suggested that gut motility can be misinterpreted by the brain as pain.

She suggested that a tricyclic antidepressant can keep the brain from misinterpreting gut motility as pain. It is part of the whole mind-gut connection that we are just beginning to barely understand. That could also potentially explain the timing of this whole crisis as well. It started shortly after I had weaned myself off my antidepressants, a process that took literally years after being on them for decades.

Ironically, one of the reasons I pushed to fully wean myself off my meds was because antidepressants slow motility. But that may have come back to bite me on the ass. And painful gut motility was not one of the withdrawal side effects that I was carefully looking out for.

She wants to talk with my psych nurse practitioner and her own GI colleague at Stony Brook, who is a motility specialist before she takes next steps. And said it would take her a week or two before she had any news. But that is ok. We have a good, sound hypothesis that explains so much. As David says, we now have hope. And waiting is easier when there is hope.

If the antidepressant can distract my brain from my lower gut motility, I should be able to start increasing my feed again. It will still take a while to climb back up to my previous feed rate. My jejunum has made it abundantly clear that it will only tolerate small increases in speed. But it would be progress towards stable nutrition and really that is all I have been asking for all along.

A note on my depression before any of you freak out. I have had depression consistently since childhood. It runs in my father’s family. Mine is medication resistant depression. I have been on various cocktails of antidepressants for a couple of decades now, and none of them did much more than push a corner of my depression aside, at best. Plus bonus side effects, like weight gain.

Almost 4 years ago now, my psych nurse practitioner (the same one who supervised me weaning off my meds) suggested that I try transcranial magnetic stimulation (TMS), a non-invasive series of magnetic stimulation with no side effects. It was life changing. It gave me my very first taste of what life without depression feels like. It is a repeatable treatment. I have had two cycles and should depression become a problem again, I will do it again.

I mention all this to reassure you all that there is a reason I weaned myself off off my depressions meds, that it was done under medical supervision and it was initiated only after the TMS had resolved my depression.

I am definitely dealing with some depressive symptoms right now. But I am not depressed. I know this because my therapist is on high alert and watching me very closely. It is also why she is so opposed to me continuing to work with the traumatic GI, despite the fact that on paper, she is the GI that I absolutely need.

This afternoon, David, Mary and I have a strategy session scheduled to figure out how to break the news that I have now seen two additional GIs to my non-communicative GI while also getting him to listen to where I am after the two rounds of Xifaxan.

Also, I want my most recent test results. He is the only one who has them because the lab belongs to Northwell Medical System which won’t let me see my test results in their portal without having a Northwell doctor. I put Mary’s name and fax number on the order, but they still haven’t sent her the results. The only reason my doctor has them is because Mary called the office on Friday and made the nurse download the results off the Northwell portal and send them directly to the doctor.

Unfortunately, we didn’t get to see my BFF after all. She is sick (not Covid) and so we didn’t get together. Given how exhausting yesterday already was, it is probably a good thing in the long run that we were able to head straight home. But good thing or not, I am sad that I didn’t get to see her.

You know that scene in Charlie and the Chocolate Factory when Violet Beauregarde starts chewing the meal gum and starts swelling up when she hits the delicious blueberry pie? Well that’s me, but without the pie. Mostly. David did pick me up some delicious blueberry/blackberry juice at the local fruitstand, but that is neither here nor there.

My feet, ankles and legs are swelling so bad that I am wearing compression socks on 90F heat. My face is puffy. I am gaining weight and look like I am on steroids. It got even my recalcitrant GI to order some bloodwork. Still waiting on those results. Hopefully, they come in today, otherwise I won’t know until next week.

This morning I took my last dose of the second round of antibiotics for my presumed SIBO. Yesterday, I accidentally pushed a flush too fast and the resulting pain made it clear that I remain no where near ready to increase my feed yet. But for a change, I get to discuss the issue with a doctor soon.

Next week is a double GI week. Tuesday, fingers-crossed, I get to see my previous GI at Stony Brook. And my complex care coordinator has been sending her all of my latest blood work results, so she will be up to date. Thursday, I have an appointment with my current GI. He noticed that my last round of bloodwork came from another GI, so the cat is out of the bag that I am looking elsewhere. But I reassured him that I was not switching doctors at this time.

In a couple of weeks we are meeting up in the Berkshires with David’s large extended family. I have started a medical packing list and it is long. And the logistics are fraught. In the past, David and I have struggled to find enough outlets and horizontal surfaces for all of our devices and chargers and my CPAP. But now we have just so much more crap to bring with us. And I am anxious about the usual paucity of outlets by the bed. I sleep while quadrupally tethered these days: my CPAP (2) my tube (1) and my pump (1). Apparently a power strip is now among our travel essentials.

But wait, there’s more. There are the syringes for flushing, feed bags, stoma cleaning and dressing supplies, formula, etc. And then there are the contingencies. If something comes up, my supplies are not the kind of thing that you can just run out to the local pharmacy to get. For example, I haven’t needed bags to vent into lately. But I will be packing some just in case. You get the picture. Back in The Before Times, David and I were firmly carry-on only travelers. Those days are clearly gone.

I am completely and utterly exhausted. Not the needing a nap kind of exhausted. The existentially drained of spoons kind of exhausted. Two months of starvation has left me utterly spent. I am finding my mindless games overwhelming. Everything is just so taxing that it is all I can do to get through the day. And the days are looooooooong. Last night I was ready for bed at 8pm. But giving in would have messed with my medication schedule ,so I forced myself to stay up until 10. I felt like Ulysses using toothpicks to keep my eyes open just to make it until bed time.

The heat isn’t helping, but it isn’t bothering me as much as it might have in previous years. My dysautonomia means that my internal thermostat is on the fritz. This is good and bad. The good is that, while I am warm, I am not sitting here in an 87F/30C room sweating miserably (I am sitting right next to an AC, but it is off. It feels too hard to climb up on a couch to close a sticky window, so I am just relying on a fan to cool me). This is also dangerous because it means that I could be overheating my body unintentionally. This is why high heat is so dangerous for the very young and the elderly. They have the same thermostat issues that I have.

Fortunately, I have a David. He will be home soon and he will close the window and turn on the AC for me. Although, to be fair, if I didn’t have David to do it for me, I would have gone and fought with the window myself. But the point remains that I need to be very careful about temperature regulation during this multiple-record breaking summer. Yet another thing to pay attention to when attentiveness is very hard to come by.

It has been another week here at Chez Evid. I had a couple of bad nights, we did some strategizing and my much anticipated doctor’s appointment for Tuesday got moved back a week. Plus some other minor stuff.

First, the minor stuff. My feet and ankles are all puffy and swollen. One of my meds is clearly making me retain water and that is messing with me tracking my weight. Nothing I can do about it, but it is irritating.

Ironically, I require more salt than the average bear because of my dysautonomia. But the puffiness in my feet seems unrelated to my salt intake because my fingers aren’t swollen or puffy. Historically, that was my key indicator for when I was retaining water.

Which brings me to my primary complaint about my current state of being. I wish I had a guide. I have no idea what is a symptom worthy of concern. And even if I did, who would I ask?

This was kinda the subject of the meeting David and I had with Mary, my Complex Care Coordinator this week. What am I looking for in a GI? My gastroparesis is generally under control these days. But I continue to deal with an acute, but rapidly heading towards chronic situation with this presumed small intestine bacterial overgrowth (SIBO) and my inability to increase the feed rate on my pump. Not to mention my deeply mysterious to all of the medical world G/J tube.

But the priority at the moment remains my current struggles with presumed SIBO and my inability to increase my nutrition. We know that the antibiotics are helping, because I felt worse when I finished my first course. I managed to convince the covering docs that this issue was not tube related, because they put me on a second course. But I will be finishing that soon. And then what?

I did some research on SIBO this week and it turns out that we know very little about it. We used to think it was rare, but it seems to be increasingly common. And there doesn’t seem to be any agreement on what the best test is to determine if you have it.

I tried to find any papers on enteral feeding and SIBO and I found one. But it was not at all relevant to my situation. But I did find further confirmation that gatroparesis puts me at higher risk for SIBO. Yay?

It turns out that my regular GI did follow the appropriate treatment protocols for SIBO, even if he is a lousy communicator. So that is good, I suppose. Where it gets dicey is in resolving SIBO. It seems like it is a difficult thing to do. Anecdotally, the papers refer to doctors having their patients on antibiotics on an ongoing basis, rotating them at set intervals to prevent antibiotic resistance. Others have their patients on antibiotics 10 days a month, just to keep the overgrowth at bay.

Neither of those options appeal to me as I near the end of my second round of antibiotics. They definitely help. Life in noticeably better when I am on them. But they are not curing me. I am fighting the heavy nausea that arrived with SIBO as I write this. In fact, I decided to write this post to help distract me from the nausea until I can take the anti-emetic that helps it. It is kinda working. But it is also exhausting. But what isn’t exhausting in my life right now?

It turns out that despite my best efforts to not hang any hopes on doctors, I really was looking forward to my appointment next week with my doctor from Stony Brook. She is the one who led me directly to my diagnosis by ruling out absolutely everything else first. I like her, I trust her and she is empathetic.

And if that alone wasn’t enough to get me excited for next week’s appointment, she is also located not from from my BFF whom I have not seen since we moved downstate a year ago. Our respective lives have just been too busy and complex to get together. I saw her more when I lived in Oregon.

Anyway, the plan was for us to get together after my appointment. The deal is, I get a hug, she and David get to have lunch together, I get another hug and we both crawl home exhausted. I am being glib, but I really was looking forward to just being in the same space as her.

I got a voice mail late yesterday (Friday) afternoon telling me that my appointment had moved back a week. I have no filters, so I burst into tears as my disappointment overwhelmed me. The message told me to call back to confirm and I did. And I remembered just how hard it is to get a hold of anyone in this system. After almost 6 minutes on hold, David reminded me that these are the kinds of things Mary can do for me. I texted her and confirming my appointment ceased to be my problem. But I was still disappointed. At least my BFF is still available the following week, so I still get to see her.

One year ago, David, the cats and I arrived at our apartment in Astoria. We were exhausted, overwhelmed and had a fair amount of trepidation about our future. Today, we are exhausted, overwhelmed and still have a fair amount of trepidation for the future. This was not at all what we expected would happen.

I held it together through the move out of sheer force of will and what was left of my fat reserves. I may be getting slightly more calories in these day, but I have absolutely no clue how I got us here. But here we are, so I must have pulled it off somehow. David was doing what he could, but he was working up until just the last couple of days before our move, so his time was severely limited.

It has been a difficult year. I tried to soften that statement with some humor, but I couldn’t pull it off. Probably because I have been starving for two years, with a few month’s buffer of starving not quite as much. And this is where this post goes off the rails.

I keep wondering why I feel so badly after 6 weeks of starvation. Surely, I should be able to manage that. And it is only our Astoria-versary that triggered the memories of my first year of this ^*&%$#* disease. Some of this may already be obvious to some or most of you. But my brain is severely compromised and some memories get put in a box to access later, but only when I get some nutrition in me.

I have been physically unable to keep myself nourished for over two years. At first, the immediately impact was mitigated by my fat reserves. I was not 100%, but I could fake it enough to do the things I needed to do. Although, it did come at the cost of my ability to do the things I wanted to do. Specifically fiber crafting.

I chose to ignore the fact that I no longer had the energy to craft, as I carefully packed up my crafting supplies for the move. Supplies that remain stubbornly unpacked to this day. There is one half of the front room in the apartment that remains virtually untouched from the day the movers brought our stuff. I haven’t even had the energy to unpack any of those carefully packed crafting supplies.

Neither of us expected the steep decline my health took almost immediately after the move. I had virtually used up my fat supplies and my body was just exhausted. Over a matter of weeks, I struggled harder and harder to get nutrition in to me. We shifted to oral formula, but even that was a significant struggle. I was at about 600 calories a day.

That was when we made the fateful decision to get me a G/J tube. I want to be clear, I have no regrets about getting Etisarap (my tube). Even in my compromised state, she is keeping me alive. I could not get in more orally than Etisarap can feed me in a day. But, I do wish someone had given us a heads-up into what to expect with a G/J tube. Because it truly has made it that much harder to navigate the medical system.

I was hanging out in Mastodon (a social media network) and a doctor posted about not being worried about seeking medical care in July when all of the new interns are released. To paraphrase their post, the interns have plenty of book learning and they are always supervised by people with more experience than them. I (foolishly, but what do you expect? I am starving my brain) responded saying that it did cause medically complex people like me pause because even the trained people didn’t know how to deal with me.

I got a pat answer, which I chose to ignore. I didn’t really care what this doctor had to say about interns. I was just screaming into the void that I want a medical system that can take care of me. And that is probably the biggest loss of the past year. Recognizing that help is not coming for me.

Life with gastroparesis and a G/J tube is very difficult. Living in a country with a crumbling medical infrastructure is very difficult. My life is the worst of both worlds.

We had planned this year to be a restorative sabbatical for David. He had plans to Flight Simulate on his snazzy new computer with his kick-ass peripherals (they really are pretty amazing–even for those of us not flight-oriented). He had writing projects in mind. And we (emphasis on the “we”) were going to explore the city together. well, as much as covid would allow.

Instead, we have spent the year exhausted and overwhelmed. Mourning the loss of our hopes and expectations. Dealing with a broken medical system where doctors ghost us or just send us to ERs that don’t know what to do with me.

We have signed a second one-year lease on our apartment. Our hope is that one of the 4 GI’s I have appointments with through September will be the one who can finally give me the support I need. I will finally get adequate nutrition and I can go back to recovering from 2+ years of malnutrition. A process that can take a year in itself. But while I am recovering, David can start recovering too.

Astoria was never meant to be a permanent place to settle. We actually really like it here. The neighborhood has a warm, communitarian feel that we love. After 25 years in mostly white Portland and then 6 years in almost entirely white Plattsburgh, Astoria is amazing. I barely leave the house, but even I can’t go outside without hearing a billion different languages and seeing reflections of so many cultures. As a kid who grew up in NYC, I find this more comforting than I can convey. I am most comfortable in a mixed-up, multi-culti world.

But, we remain part of NYC, so that warm, neighborhoody feeling comes at a high price. Both literally and figuratively. There is just a serious layer of bureaucratic bullshit placed on top of everything here. And that is what makes it an unattractive place to settle long term. Besides which, it probably has less than a decade before it is gentrified beyond recognition. The process has already begun.

But deciding where we go next is a problem for future Eva and David. Today we go to yet another street fair to celebrate this fair community’s love of street life. I can’t think of a better way to celebrate our Astoriaversary. Can you?



*I was not filtering curse words. I just could not come up with one that I felt was appropriate. I may be losing access to some of my words, but my knowledge that remain available to more nourished brains continues.