Part 2 of ????

Before we go back into the past, here is a short update from today. As directed, I sent my GI an update this morning at 10am. When I hadn’t heard back by almost 3, my complex care coordinator called the office for the second nudge of the day (the first, earlier in the day, confirmed that he had read it). Time is of the essence because the office closes at 4pm, and he is off Fridays, so if I don’t get a response today, the earliest I will hear back is Monday.

His response is mostly useless. He says to increase my Lyrica to 3x/day in a couple of days (reiterating what he told me at my appointment on Monday), but did not answer any of my questions about hydration, nutrition or possible causes for this “whatever is going on with me.”

I wrote back telling him that I have not urinated since the few drops I squeezed out last night before bed at 10pm. I then reiterated my question about when we should be considering home hydration. My complex care coordinator then promptly called the office to make sure that he read my response.

Now, I will turn the blog over to David,
Sunday, May 8, Eva sleeps a lot of the day, spends a few hours sitting up, but is feeling pretty crappy all day. It gets worse as it becomes evening. Eva is lying absolutely still on the bed, in the one position that is slightly less uncomfortable than the others. Horrible nausea. Dysautonomia resulting in alternating sweats and chills. Eva would have gone to the ED, except it seems like they can’t do anything to help. She is venting as much as 500 ml overnight. 

Monday morning is no better. Eva spends all of Monday in bed. We still can’t get ahold of Eva’s GI, but the complex care coordinator gets us an appointment for Tuesday morning with another doctor in the office, and her GI says he will call her. N

Eva’s GI cancels the appointment for Tuesday with his associate. Eva’s case is too complex for someone else to deal with. He says he tried to call but didn’t even get voicemail (Eva’s phone absolutely has voicemail set up and several of us called Eva’s phone and it worked just fine). We leave Eva’s number and my number to make sure he has the right phone number plus a backup.  He says he will call back. He doesn’t. 

Eva’s jejunum (the very beginning of the small intestine, and the body part that gives “j” to Eva’s “G-J tube”) is becoming sore. This is a new symptom for Eva and will become part of an ongoing set of issues that involve the intestines (as opposed to the stomach, which is where gastroparesis manifests). 

By Monday evening, we are beginning to think about whether Eva is heading for an in-patient stay at the hospital. 

A word about Dancer. Throughout the time Eva has been sick, he has been taking great care of Eva, spending however many hours a day in bed with Eva, snuggling with her, and nosing at her and even nipping at her if she starts to get up and he doesn’t think she is feeling well enough for that. [FWIW, he isn’t wrong in his concern. – ed.] We aren’t sure we particularly approve of the last behavior, but it seems to come from a place of love and concern. 

Tuesday morning (May 9), Eva wakes up outrageously early in pain. After consulting with the complex care coordinator, she wakes me about 8 AM and we are into the NY Presbyterian Cornell Weill Hospital Emergency Department (ED) at 10:00 AM. Immediately, they whisk Eva away for an EKG. Apparently this is something they just do.

Eva is experience significant dysregulation: sweats and chills alternating minute by minute. There is nausea and cramping (the cramping is intestina,l a brand new symptom). She is given IV hydration which improves how she is feeling enormously, IV Zofran which addresses the nausea. 

The Nurse Practitioner (NP) working with Eva is the first ED person who seems really conversant with GJ tubes. He talks knowledgeably about choices for administering the Reglan.He gives Eva Reglan through an IV, all as a single bolus (push). This turns out to be a bad thing. Eva becomes even more miserable, shivering so much she is shaking the bed. She can’t put together sentences. The NP suspects an allergic reaction to the speed with which the Reglan was administered, and gives Eva IV Benadryl. Eva sleeps, still shivering at times. 

The ED doc wants a CT scan of Eva’s stomach, intestines, etc. They don’t see anything relevant to how Eva is feeling, but Eva’s appendix is “prominent”. A surgical resident comes to find us to talk about Eva’s appendix. We are confused because no one has mentioned anything about Eva’s appendix or the CT scan results to us yet, and the surgical resident is talking like we came in because we thought there was a problem with Eva’s appendix. After about five minutes, we figure out what was going on (I know, I could have told this story so much better if I led you through the process as we experienced it, but I’m somewhat distracted by making sure Eva gets all her meds, has some nutrition and some hydration; clearly, I will never be submitting this blog post as a writing sample). The resident examines Eva, pokes around at her abdomen, says it seems unlikely the appendix is a problem, but the surgical attending will have to make that call, and he’s in surgery. She leaves. Eva’s stomach and intestines are really painful following being poked at by the resident (okay, palpated by the resident). 

At 5:00 PM (Tuesday), Eva’s GI finally calls back (the call back we’ve been waiting on since Thursday morning, with the in-person visit with his associate scheduled for 9:30 AM Tuesday morning which he canceled). Unsurprisingly, it is not a particularly useful call, in part because Eva is beginning to feel a little more stable, in part because she is exhausted and dopey and not doing great communicating, and in part because we haven’t really figured out yet that there are times when I need to take over communication with medical providers when she’s feeling like this. 

By 6:00 PM, we are beginning to feel like they have done all the stabilization they are likely to do, and we’re beginning to think about heading home. Unfortunately, we are still waiting on the surgical attending to take a look at Eva’s appendix situation, and he’s in surgery, and they really don’t want to send us home without that. 

I’m getting dopey. I haven’t eaten since 8:30 that morning, and my low blood sugar is beginning to show. But this is a classy hospital, and when I ask where I can buy a sandwich, they point me around the corner to a supply of food available for patients and families in the ED. 

Around 8:00 PM a different surgical resident comes to poke around at Eva’s appendix. This again results in pain. She also thinks the appendix is probably fine, but the attending still needs to sign off.  The attending is still in surgery. He will look at the CT scan as soon as he gets out. 

Around 10:00 PM the attending sends word that the appendix, while “prominent” on the CT scan, looks fine. We head home, exhausted.  While we are home by 10:30, we both need time to wind down. Eva is ready for bed well before midnight. I’m not laying down to sleep until 2:00 AM. 

Timey-Wimey update

David is still working on the story of my adventures as an inpatient, but I keep distracting him with needing someone compos mentis to track my meds, bring me things (and not just because I am under a cat, but because as you will soon read, malnutrition has left me a bit wobbly) and the like. Instead I am going with a non-linear approach and sharing today’s update now.

I am home and the pain is mostly being managed, by which I mean that I can tune it out if I am adequately distracted. I am still only able to feed at half my normal rate in a drugged sleep (benadryl being the drug of choice), which we have dubbed “benadryl naps.” That gives me a grand total of 470 calories a day and a bit less than 8oz of “free water” towards my hydration.

I am doing my best to hydrate orally with baby popsicles (2oz) of either juice or Gatorade and the occasional 1oz of juice with my meds. So maybe a generous 6oz/day. But David got me delicious papaya and passion fruit juices from the local market, which is a serious bonus for my tastebuds, who are feeling kinda neglected. I am not so much craving food as I am flavors.

We have gotten my nausea back under enough control with access to my primary motility drug and medical marijuana that I am no longer venting more fluid than I am taking in. And I have gone back to eating in 3 bite increments every few hours.

My doctor is “unconcerned” about my nutrition or hydration. My first appointment with a new GI is July 17th. Although, my complex care coordinator has set up a total of 4 appointments with motility specialists in 3 states and I am on all of their cancellation lists, so there is some hope for something sooner.

Adventures in a Queens Emergency Department


The following is Part I of the account of the last week and a half. The writer is David, because if we were waiting for Eva to be up for writing, it might be a while.

On Wednesday, May 3, Eva’s nausea ramped up to intolerable levels. She lives with constant nausea, so when she says it’s bad, it’s pretty awful. She could no longer take in liquid orally. At the time, she was still able to tolerate some jello and tiny fruit juice popsicles. 

At the same time, she was starting to vent large quantities of fluid through her G-tube (gastric-tube, i.e., from the stomach). She vented roughly 150 ml in a couple of hours. This is very unusual, but not a unique occurrence for Eva.  

By the next day, her J tube (jejunum-tube, the beginning of the small intestine) wanted in on the action and was insisting on venting small amounts of bile. This is a unique occurrence. Eva was using medical marijuana, Zofran, ginger and a scopolamine patch to try to control nausea, to no avail. 

As an aside, these events of 10 days ago are so hazy in either of our minds, that I’m looking back to text chains of conversations with our complex care coordinator to reconstruct things. It has been a long week and a half.

Eva’s current GI was unavailable for conversations on this Thursday.

On Friday, Eva’s GI is off. But we did manage to have a conversation with the on call GI at his practice, who pulled Eva off the scopolamine and put her on a dose of Ativan. 

At this point, Eva is feeling her electrolytes getting out of whack. One of the issues around gastroparesis is that the body processes salt differently and requires much more of it. Eva normally uses a packet of electrolytes for high intensity athletes daily. But she also requires regular hydration because the free water available in her formula is limited, and what she can drink is extremely limited, and she wasn’t getting enough extra in her flushes (syringes of water used to clear the j-tube every four hours or so during awake hours). This is about to become relevant. 

Saturday, things are getting worse. Eva is feeling “wonky and woozy.” Electrolytes are out of balance, she is dehydrated. We clearly need to get Eva some IV hydration. 

This seems like something simple to do. There are spas that offer IV hydration. We figure we will just show up at an urgent care around the corner and get this dealt with. No big deal. 

Big deal. Apparently urgent care doesn’t do hydration. Apparently the spas aren’t as set up to do this as their advertising claims. The complex care coordinators are not wild about us having a nurse come to the house to administer hydration because they’d kind of like testing available, just in case. This means . . . off to the hospital. 

But remember, this isn’t a big deal, we just need a bag of saline water to flow into Eva’s veins. We were originally looking to do this at an urgent care. So, instead of heading into Manhattan to a serious hospital, we head to a minor hospital in Queens (albeit one in the same medical system that we are moving our care to–NY Presbyterian). 

We arrive around two. We sit in the waiting area. For hours. Until around 5. Which sort of makes sense, because Eva doesn’t present as a particularly urgent case. Then they bring us into the treatment areas. 

We explain to a PA (physician’s assistant) what the issue is (nausea, venting through G tube and a bit through J tube, dehydration. The PA is clearly confused. We realize the PA has no idea what a GJ tube is. We educate the PA (Eva feeds through the J tube, vents through the G tube . . .).

By around 6:00, maybe, we are talking with an attending. Who isn’t quite sure what to do. She’s willing to do the saline and all, but she wants to know what normally happens when we come in for treatment. Should she be admitting Eva for in-patient care? Fun fact: this is our first time on this rodeo–we don’t know what we need. That’s why she’s the doctor. This is when we realize that there is no situation when it’s a good idea to take Eva to a less than major hospital. Nothing with Eva’s health is ever simple.

They finally get her some IV Zofran for the nausea and a hydration bag at around 7:00 PM. Five hours after we arrived at the ED (Emergency Department). 

IV Zofran is Eva’s favorite drug. Like ever. It is magic for her. It makes the nausea go away. Every time. Until now. It does nothing this time. 

By 9:00 PM the fluid has fully entered Eva’s system and the off kilter, woozy feeling has retreated. They give Eva another dose of IV Zofran and send us home. The second dose reduces the nausea to a tolerable but still pretty significant level. Eva and I are beginning to have intimations that this may turn into a “thing

Tragedy+Time=Comedy

For those keeping track, feeding pump #8 just failed. This one cannot hold a charge adequately. The battery life of my feeding pump should be 18 hours. that gives me full mobility without having to be tethered to a power cord. But pump #8 will only hold 4 1/2 hours of charge, leaving me largely tethered to an outlet. I have called the supplier and pump #9 should arrive Monday.

My fabulous Complex Care Coordinator has found a way for my insurance company to buy me a brand new pump. It requires some minor hoop jumping, but they are on that. My outstanding question is what happens if my brand new pump breaks? After all, shit does happen. So she is looking into that for me too.

In the much less good news department, I got horribly, horribly nauseated Wednesday evening. Even when I am fully medicated, I live with an underlying degree of nausea. It is just my reality. So when I say that my nausea on Wednesday night hit a 9+, I want you to understand just how sick I felt.

I cannot vomit, no matter how badly I want to. My stomach just doesn’t do reverse peristalsis (or even regular peristalsis, which is why I have my beloved Etisarap feeding tube). But on Wednesday, I learned that I can “vomit” out of my G tube. What that entails is me opening up my G tube and my stomach forcefully pushing out whatever stomach contents are in there. Usually a combination of water and bile.

I have regularly have what I call “Angry Stomach.” I feel pressure in my G tube and opening it and letting it drain a bit makes me feel more comfortable. I usually lose just a few milliliters of precious liquid, not enough to dehydrate me.

Wednesday evening was a completely different ballgame. I had Angry Stomach set to 11. And the output just kept going and going. I have no idea where all the liquid was coming from since I have been skirting the edge of adequate hydration levels for the past couple of weeks, but somehow my body just kept going. I drained 150ml of fluid in about 2 hours. Then I went to bed and when I woke up I had drained another 150ml or so.

Side note, one of my super powers is now “vomiting” while I sleep. All it takes is connecting my G tube to a drainage bag and my autonomic nervous system does the rest.

I relayed my tale of woe to my Complex Care Coordinator who then set about getting me in to see my GI. But my GI’s office is completely non-responsive and despite her calling several times a day, it wasn’t until early this afternoon (Friday) that she got a GI on the phone. My GI doesn’t work on Fridays, so she had to really push to get a covering GI to call me.

In between, her medical director was really concerned about my hydration and electrolyte levels and was hoping to at least get those things addressed. Once again, since she couldn’t get a hold of a doctor until this afternoon, the crisis had mostly passed.

I woke up very early this morning with a ranging dehydration headache. But apparently even my body knows when not to put up a fight and I was able to drink about 6oz of seltzer with gatorade first thing after getting up. But my electrolytes are clearly off. I remember the wibbly wobbly feeling from before I started using my high test electrolytes.

The doctor was completely unconcerned about my hydration levels or my electrolytes. In fact, he was downright dismissive about me mentioning them. He also tried to (poorly) tubesplain me, so clearly he was talking out of his ass. I did confirm that it was safe to use a second packet of my uber electrolytes, which I just flushed into my tube. And I am already feeling much better, so this was clearly a case of Eva 1, Doctor 0.

The on-call doctor blamed the scopolamine patches for my Wednesday evening troubles. It was my second patch, and I had no ill effects from the first one. But he suggested I remove it anyway. Apparently my regular GI was also concerned about the scopolamine. Not that he bothered to raise any concerns when I originally asked for the Rx because my nausea management protocol was simply not cutting it anymore. He just told me to make an appointment, which isn’t until the 15th of May.

I asked the on-call doctor what I should do for nausea management because Zofran is only working for a couple of hours, leaving me miserable for a couple of hours before I get my next dose. At first he shrugged (this was a phone call, but I could hear his complete lack of concern in his voice). He then suggested Ativan for the nausea. When I hesitated a bit, he just pushed the Ativan harder. I have to wonder if he selected an anti-anxiety med to calm down this “obviously hysterical” patient. Regardless, I am not one to dismiss possible nausea management tools, so David will go pick up my Rx and I will give it a try. As David says at the very least I won’t be anxious about my nausea.

My Complex Care Coordinator is also busily collecting my records for a future visit to Johns Hopkins Motility Center which is one of the top two motility centers in the US. The second is at the Mayo Clinic in Rochester MN. She currently has all of my medical records except from my current GI. But she just keeps calling them and eventually she will succeed. I will obviously know once more after the folks at Johns Hopkins have had a chance to review my records.

I cannot wait to jettison my current GI in favor of one whose experience includes both motility issues and enteral nutrition. In the meanwhile, I will make do with what I have until September 5th.

And the beat goes on

You know how when you are recovering from being sick, there is that day when you feel pretty good. So you decide to use that energy to catch up on things. And then it all backfires because you have exhausted yourself and now feel worse? Well, that is my life.

David observed that I have a habit of using up my spoons as soon as I get them. This keeps me in a constant deficit. He is absolutely correct in his observation, but it is a hard habit to break. My challenge is that given the nature of gastroparesis, I never know when I am going to feel well again, so I feel like I have to grab those moments when I can.

Case in point, I started PT for my shoulder last week. The exercises I have are not particularly strenuous. When the PT asked where I felt the pain when he had me move my arm around, I told him my shoulder and my stomach. I could see that he was confused, so I once again reminded him that my stomach is the most sensitive and vulnerable part of my body and that I feel discomfort there whenever my body gets stressed. He remained bewildered and moved on.

After he left, I iced my shoulder and didn’t think much more about it. That is until I woke up crying in nausea and pain later that night. Clearly I had overdone it, but how am I supposed to know what I can do with such a delayed reaction?

My physical therapist is very young (early to mid-twenties) and has clearly never worked with anyone with a chronic illness before. He seems very surprised that I have been able to tolerate the kind of shoulder pain I have for this long. I tried explaining to him that my baseline is pain and nausea and they are always with me. I have simply learned to tune out the constant nausea and that process has also allowed me to tolerate a bad shoulder for as long as I have.

Tuning out constant nausea does not come free and is part of the reason that I continue to have so little energy despite my stable nutrition. And my nausea has been particularly bad these past couple of weeks. I continue to struggle to keep my hydration where it should be because drinking is such a miserable experience. I did recently learn that ice cream counts towards hydration, so I can incorporate it into my routine along with jello and juice cubes.

On Friday, I added a scopolamine patch to my existent nausea management cocktail of ginger, zofran and medical cannabis. I think it is helping, but only time will tell how much it is helping. It wasn’t enough when I did a scaled down set of shoulder exercises on Saturday. I scaled my exercises down again today and hope this is where I am going to be able to build from.

In other news, my supplier continues to send me bad pumps. Number 6 is theoretically enroute to me now. The primary issue with all of the pumps is that they have all exceeded the manufacturers functional life by a fair amount. A brand new pump should last 5 years with daily use. The pumps I have been getting have been in service for up to 8 years.

My complex care coordinator called my supplier to try to get them to send me a new pump. Apparently, they do not have a single new pump in their entire fleet. I get that new pumps are expensive, close to $700. However, given that they charge my $85/month to rent my pump, you would think they could cycle in a few new ones from time to time.

Feeding pumps are critical to my nutrition. They are the only way to get my formula into me. G tubes have options. You can bolus or gravity feed with a tube going straight into your stomach. But the only option with a G/J or J tube is using a pump. That is why having a functional pump is so critical.

Tuesday we get to sojourn into Manhattan to see my stoma nurse. My stoma is yet another one of those things that has had to wait its turn until I had the capacity to deal with. Which is saying a lot because my complex care coordinator did all of the legwork on this one. All I need to do is show up. But even that feels daunting because I know it will take so much out of me.

I did save some of the best news for last. I have an appointment with a new GI. Unfortunately, the appointment isn’t until early September. But, I am on the cancellation list. This GI doesn’t specialize in gastroparesis, per se, but in reviewing her publications she is definitely knowledgeable about motility issues and PEG tubes like mine. One of her most recent publications was about the benefits of working with a wrap around care team, which I see as an extra point in her favor.

Proof of Life

I know that I have been quiet for a while. It is not because I have had nothing to share. Quite the contrary, I have had too much going on. First, David and I got sick with something that was not Covid. We always mask indoors, even when just stepping out of the apartment to take out the trash, despite having a large, airy hallway. But those fomites will still get you. Remember kids, keep washing your hands.

The acute body aches and general additional misery has passed, but my body is still trying to get back to its usual semi-functional baseline. My nausea level has been turned up and I am back to needing naps.

In addition, I have had feeding pump issues (I am on my fifth feeding pump in 2 1/2 weeks) and I started PT for my shoulder. So this is all you are going to get from me until I am able to get things stabilized and can write again without it turning my nausea up to 11.

Sunshine on a Stick

It has been a bummer of a week here at Chez Evid. In addition to all of the Passover anxiety, and the general physical exhaustion from having a busy week just prior, Nommie gave us a real scare. The combination was simply too much for my beleaguered self and my health took a downturn.

Shortly before Passover, Nommie started having bloody diarrhea and very quickly went from too thin to bony and frail. David took him to the vet and he had, in fact, drooped down to <8lbs. He would be a healthy weight at 12lbs. Not knowing the cause of the distress, the vet gave him antibiotics in case it was bacterial. But capturing Nommie to give him meds would terrify him and he would eventually hide and not come out until he felt safe again.

We tried mixing the meds into wet food, but he wouldn’t go near it. Cats really cannot go for very long without eating before it becomes a problem in and of itself. Nommie was already too thin, so we went back to just giving him straight wet food. Fortunately, he shortly went back to eating. He still didn’t look great for a few seriously worrying days. Gratefully, he seems to be mostly back to himself again. He is still too thin and frail, but he can jump up to his favorite spots on the couches again.

Right before Passover I also managed to get an appointment with a possible PCP so finally someone could take a look at my miserably, achy shoulder. Spoiler alert: this doctor is not my new PCP.

Even though I came in for an acute issue, she went through the whole new patient protocol, never once lifting her eyes from the screen. I told her I was there for a very painful left shoulder. I explained that I can only sleep on that side because the nausea gets too bad if I sleep on my right side or my back. I didn’t even mention my stomach because the nurse who took my vitals confirmed that I had a G/J tube so I knew it was in my record. Not to mention that I was hooked up to a feed at the time so I had a visible tube snaking out from under my shirt, should she decide to look at me at all.

She asked how long the issue had been going on. I said several months. And she kept confirming that I hadn’t been to see anyone about it during that time. Not even an orthopedist? I explained several times that I was dealing with a literal life and death situation, first functioning at a serious and extended caloric deficit and then working out issues with my feeding tube and that it was only now that I had the capacity to deal with anything besides the absolute basics.

She “uh hum”-ed and told me that she put in an Rx for lidocaine and recommended physical therapy. She also suggested that I take an over the counter anti-inflammatory nflammatory and “uh-hum”-ed when I explained that I cannot take anti-inflammatories because they irritate my stomach. You remember that stomach that is already seriously uncomfortable and has a tube coming out of it to keep me alive?

I jumped on the Rx for PT and she told me “to really give it a try.” That was my intent as that was what I was originally hoping to get out of the appointment. Honestly, the lidocaine was an unexpected bonus. I figured I would have to wait until physical therapy started doing the trick for pain relief.

Never during the entire appointment, despite it being the primary topic of conversation, did she even look at my shoulder. No assessment of pain (she never asked but I made it clear that it was enough to keep me from sleeping), no checking range of motion. Absolutely nothing. But she did put in an order to get my annual mammogram (I am at exactly a year from my last one, so I am not even behind schedule) and stated that she was very strict on that point.

The next day David went to pick up the lidocaine patches and learned that the Rx was for only 10 patches. The pharmacist was confused because the standard Rx is 30 patches. Suffice it to say, she wasn’t listening to me at all.

Fortunately for me, the lidocaine patches do help and make falling and staying asleep that much easier. I have submitted a refill request and we will just have to see what she does.

I also asked my new Complex Care Coordinators to get me set up with PT, although I could not find the order on the patient portal. There was indeed an order for a mammogram, but no order for PT. She apparently hadn’t even bothered with that little detail. Fortunately, I had the Complex Care Coordinators to do the heavy lifting to get an actual PT order from her and find me a physical therapist.

Hopefully, you can see why my health took a hit. It wasn’t exactly the quiet and restful week that I needed.

In this week’s spin of the Wheel of Misery we landed on hydration management. Drinking has always been more uncomfortable to me than eating. I can eat pretty much anything I want, as long as it is no more than a few bites. But drinking feels like a lead weight triggering a nausea bomb. Like everything about gastroparesis, I have good drinking days and bad drinking days. But this week I seem to have gotten stuck in a bad drinking rut. Which meant we were on dehydration watch.

I added in some additional flushes to increase my hydration, but that wasn’t enough. I was thirsty, but drinking made me feel awful. I tried sucking on ice cubes, but that was almost as bad. Then I remembered that my stomach no longer accepts unadulterated water. It has to have something in it. It can be sugar, it can be bullion, it can be tea leaves or herbs, but it damn well better not be just straight up water.

Apparently, this is an actual gastroparesis thing and I am not alone. But I do live in NYC which has award winning water, and I am just irritated that I no longer get to appreciate it.

David, remembering that jello and popsicles count for hydration purposes, ran out to pick up some fruit juice and jello powder. Regular popsicles are way more than I can manage at a single time, so he decided to make ice tray popsicles.

Remember that weird PSA from the ’70’s about making ice tray popsicles with fruit juice? Well that is exactly what David did. Although it is a lot messier and harder to get the toothpicks in than advertised.

We remain on hydration watch, but the jello and popsicles are working as they should. Based on both urine concentration and skin pinch tests, I am back to managing my hydration well.

But fret not, the week was not a total disaster. Our very dear and beloved friend Tricia came to NYC on a Theater Weekend Extravaganza™️ with her son and his girlfriend. She trekked from Brooklyn to Astoria to see us while her son was pulling the kind of shenanigans to see a band that made my own teenage self super proud of him for.

I am incredibly grateful for the technology that has allowed me to stay in touch with the people I love through our cross country moves, a pandemic and now a chronic illness. Tricia has been dealing with her own metric ton of crap these past few years, and there is something to be said for being in the same space to diss on Radical Acceptance (it so suuuuucks, but damn it, it works <insert stomping foot emoji>) with someone. It is way more satisfying than doing it over text.

Seriously though, It has just been so long since we were with her. She very wisely planned a firm end time to our visit with another commitment because she knew that we would all take as much time together as possible. And I started our visit wiped out and was simultaneously relieved and crushed that we only had an hour and a half. She was absolutely the brightest spot in an otherwise seriously crappy week.

Prioritizing my health does not come naturally to me. Because of this, I have battled auto-immune issues, Epstein-Barr (3 times!) and more adrenal burnouts than I can remember. I truly believe that my lifelong refusal to listen to my body’s pleas for help contributed to my gastroparesis.

Eventually, my body made its needs simply impossible to ignore. Something I am acutely aware of as I struggle with a bad day like today, likely exacerbated by an emotionally difficult week combined with a visit to a doctor (not a GI!).

I have always done my best to live a life true to the values that drive me: a commitment to service in pursuit of equity and justice. And those values have served me well intellectually and emotionally. But often at the cost of my physical health. Usually because I had agreed to serve on one more board than I should have. I take full responsibility for having overburdened myself. No one forced me to volunteer my time. But I usually enjoyed the work and found it fulfilling.

Now I find myself at an unexpected crossroads where my body’s needs and my values intersect. I truly hope that I have made it abundantly clear that I don’t believe healthcare should be behind a paywall. Everyone, regardless of anything, deserve access to high quality healthcare. Full stop.

I hope I have made it equally clear that our medical “system” is beyond broken. Between insurers solely in pursuit of the bottom line, burnt out and often underpaid medical staff who are working in severely understaffed conditions and an education system that makes medicine a career out of reach for too many, leaving those who graduate with debt that forces them out of desperately needed primary care careers.

All this is a convoluted way of saying that I managed to find a resource that will take the burden off me navigating this system, helping me find the providers I need and take over all of the insurance hassles. That will free up my time and energy to my healing and recovery and live the best life that my gastroparesis allows me.

The issue is that this resource is far out of reach of most because of its cost. But I am beyond blessed and privileged enough to be able to access it. And that makes me very uncomfortable to sit with.

At the same time, I can viscerally feel how the anxiety and stress that came with a simple doctor’s appointment for my poor, aching shoulder to remind me just how much my health is dependent on keeping my life as simple as possible. And that simplicity is the difference between enjoying all of the blessings that my life still has to offer and the misery and struggle of the last 2 years.

My needs in no way justify the sheer inequity of my privilege. But just as not finishing the food on your plate doesn’t do anything for the hunger and food insecurity in the world, me not accepting this expensive resource does nothing to help make quality healthcare more equitable for anyone. I also (sort of, maybe, not really) know that I am doing what I am capable of right now to bring positive change into a very broken world. I also accept that my discomfort is appropriate and to some degree, warranted. My challenge going forward is not letting that discomfort slip into the guilt that will cost me energy. Instead, I need to use the energy this much needed support will provide me to live as full a life as I can and continue to do what I can to live my values. But it will take some serious reprogramming, on my part.

Moderation is a Virtue

Let me just put this up front, I completely overdid it this past week and I am paying for it. Both David and I knew it would be a stretch and I am trying very hard to pace myself. But with most of the scheduling being out of my control, I just pushed through knowing that I would pay at the end.

The week started with a bang. Longtime friends from Portland were in NYC and they popped over to say hi. They were the first friends that I have seen post tube, which means that I had much more energy for them than for our last visitor. Last time I pulled a Frida Kahlo and spent some of the visit in bed lying down so I could still at least listen to the conversation. This was a vast improvement as I was able to sit up and socialize the whole time.

Shortly after my friends left, I had therapy, which also uses up a lot of energy. At the end of the day, I was completely wiped. The next two days I had acupuncture where I learned two things. The first was a reminder that healing takes energy. Energy my body was already a bit stretched for. The second is that I need to set clearer boundaries with medical providers.

My acupuncturist got cocky over his ability to heal my stomach. He started talking about just getting my stomach to a place where it was stable, albeit still not working. Then he decided that he could completely heal my stomach. In just two treatments. When I told him that it hadn’t worked, he got frustrated with me because he didn’t pull off the miracle that he had been hoping for. But, he did get something happening in my stomach, but it backfired and now I am more uncomfortable than before he started. I am sure everything will settle down. Just now I need to find a new acupuncturist.

Remember that program that matches patients with rare diseases with medical students? Well I got matched with a 4th year medical student training to be a GI. We had our first training session on Thursday and then I spoke with my medical student for an hour on Friday. I have a lot more to say about the program and my student, but that will have to wait until I have a bit more energy.

Suffice it to say that I was a basket case yesterday. I literally woke up crying. Today is a little better, so it is just a matter of time before I get back to my status quo. As much as the exhaustion irritates me, it is such a relief to know that my stable nutrition means that I can get through the exhaustion given the time.

I have reconciled with the fact that this is going to be a strange and unsatisfying Passover. But given that this will be the 4th in a row, I think I can handle it. Thanks to my brother, I have finally been able to connect with a community that truly gets my struggle. My brother introduced me to a Facebook group called “A Mitzvah to Eat.” These are people like myself whose health issues force us to do Judaism differently than we otherwise would, all things being equal. And while their issues may not be the same as mine, it has been truly comforting to read the comments from people who just get it on a different level.

I have been so compromised by malnutrition that I didn’t even know to expect some of the barriers and hurdles that I am encountering as part of my recovery. At least now I know that as my body heals, different issues will emerge, often before I have the brain capacity to deal with them. What I clearly still need to learn is to pace myself as much as possible. And if I cannot do that because of circumstances beyond my control, to at least leave an adequate commitment-free period afterwards for recovery. Wish me luck, because clearly patience and moderation do not come naturally to me.

Happiness is…

  • Being able to run errands by myself. It is nice to gain some independence back, even if that independence is limited to a 4 block radius.
  • Being able to walk 3/4 mile and go to 4 stores and come home with enough energy to disconnect from a feed and write this blog post.
  • Knowing that even though the walk will exhaust me, my nutrition is stable enough that I can rely on my energy returning after a day or so, with no long lasting impacts.
  • Being able to get David a treat for a change. This one is important because he will never say no when I ask him to get me something, and he is long overdue for some reciprocity.
  • Living in a place with enough single people that local bakeries make mini Irish Soda Breads. I love Irish soda bread, David is appropriately partial to Irish Brown Bread, so I have traditionally eaten the whole loaf myself. This year I can do that again, given 5 or so days.
  • Feeling good enough to go out when the weather is good. There have been a couple of super windy days this week when I would have gone out but for the weather. But today was a lovely, warm day.
  • Trusting my body when it tells me when that it is time to rest.

    Happy St. Gertrude’s Day, have a good weekend, a Shabbat Shalom and a very happy birthday to a puppy who turns 3 today.