Author: evaschweber

I woke up an hour earlier than usual today, but I didn’t want to mess with my medication schedule. This resulted in a tough afternoon where I woke up from a too hot nap in a fair amount of pain. To say I was grumpy would be an understatement.

I woke up to a text from a friend. Actually, she is more than that, she is a member of my village. As are her spouse and kids. And her kids are both amazing. And one of them, her son, was born to be a rockstar.

When he was a younger kid, I wanna say middle school-ish, but my sense of time is all whacked out. Anyway, the school had an entrepreneurship fair. And each of the kids got a wad of “cash” to spend as they wanted. He put on a show and made serious bank. The kids could have spent their money at any of the stalls, but the experience he provided them was what moved them more than anything else. And it was an amazing performance. I would have paid him too.

Anyway, he is now 16 and a damn fine guitarist. He has put in the time, the blood, sweat and tears. This has not been an easy journey for him. Or his parents. But he has been invited to audition for a band’s national tour. And I know that however this audition turns out, I am watching the beginning of a kick-ass musicians’s career. Because he has the talent and the drive and other musicians are seeing it too. And I can barely contain the pride I feel for this kid.

Ok, back to me. I was honestly buoyed enough by that to start feeling better. Then I get a call from a GI’s office to schedule an appointment on JUNE 20th. a GI appointment with someone besides my lousy doctor this month.

But wait, there’s more. This GI is also the head of NYU Langone’s enteral access team. So she specializes in feeding tubes and nutrition. She is absolutely the right GI for me right now. And honestly, my shoulders dropped in relief from tension I’ve been holding for a month. I don’t have to make it all of the way to July before I can get some help. Hell, it is less than 3 weeks away. I can totally make it until then.

Anyway, just some good news that I couldn’t wait to share.

So yeah, my GI is pissed off and lying to me (poorly), but I am feeling relatively good thanks to my support team. My palliative nurse is doing a good job managing my pain and nausea, Mary, my Complex Care Coordinator is working her magic and David been able to shift his attention to enjoying more fun things.

When I say that my pain is managed, I mean specifically, as long as I am not ingesting anything orally or via tube. This is a boon, because previously, I was moaning and crying in pain much of the time. But now, I am only varying degrees of uncomfortable when I do things like flush, feed or drink. And I only have pain when I increase the rate of my feed.

The pain management does allow me to get at least of liter of hydration a day with reasonable comfort (the variance is mostly meds coming up to full effectiveness or beginning to wear off). This we now know, thanks to a kind and communicative on-call doctor, is enough to keep me out of the ED. Which alone, has done wonders to help my healing

I have tried, twice, to increase the rate of my feed, and failed both times. My GI just increased my pain meds, although I cannot start on the increase yet because it is a controlled substance and I increased that pain med too recently. I am perfectly ok with this delay, because I am already at my peak tolerance for the side effects. And honestly, I don’t expect it will make much of a difference at this point. I think it is time to stop just throwing meds at the problem and to start trying to figure out what is going on. And increase my nutrition. That one is huge.

I have been stuck at 800 calories a day for about a month now. I do try to supplement my feed as much as possible. I only drink juice. I supplement my hydration with Ben & Jerry’s. I eat cotton candy. This last one is cool and was a tip passed on to me by a friend who was on parenteral nutrition (IV) for almost 2 decades. Your stomach doesn’t see cotton candy as food. It is just spun sugar and super easy to digest. It is just like swallowing saliva.

Well, that is mostly true. Lots of swallowing, including the hyper-salivation that comes with nausea, triggers my digestive system pain. So, I even have limits to my cotton candy. But nevertheless, it remains the easiest thing for me to ingest.

My point being, that I am doing everything in my power to increase my caloric intake. But even Ben & Jerry’s calories are negligible in 30-60ml increments. The bottom line is that I am starving and have been doing so for a month now.

I have lost 18lbs to date. Which is exactly how much I gained from my feeding tube. I mentioned this to my GI in terms of asking whether it was now time to consider TPN (IV feeding). Before you read his response, you should know that the subject of the email he was responding to was “Significant weight loss” and that in that very same email, I had made clear that my hydration had stabilized and I was solely concerned about my nutrition:

“As far as parenteral (IV) nutrition – if things have not improved at all over the past few days, and you are not making much urine at all, then it can be considered. It would likely need initiation as an inpatient, in order to get the hardware, care and delivery of feeds initiated, etc. Not likely a quick process. Willing?”

Clearly he needs to improve his reading comprehension skills. He is also clearly pretty damn dead set again getting me my nutrition. He had scheduled me for a follow-up appointment on July 20th. Mary called the office and pushed back. Mary is now friendly with the staff and even they agreed that a July 20th appointment was absurd. I now have an appointment on June 8th. Given how firm he was about ending my last appointment on time and leaving questions unanswered, and my brain being what it is these days, David is already strategizing the conversation so I control the appointment, not the GI. But I remain pessimistic that the doctor will do anything useful.

That leaves me hanging on until July 11th, when I get to go back to my GI at Stony Brook (more on that in a minute). The alternative is to drop 20 more lbs at which point I will be officially underweight based on BMI and I might be able to get an ED to admit me. For those of you who haven’t seen me recently, it blows my mind that the medical profession puts so much faith in a calculation that, while explicitly defined as not meant to be used as a measure of health, thinks that I have 20 more lbs to lose!

Back to Stony Brook and their Gastrointestinal Women’s Center. When I first suspected that I had Gastroparesis and it was a rare disease that primarily impacted women, I directed my research toward finding a GI that understood women’s health and discovered the program at Stony Brook in Long Island.

I really like my GI there. She is inquisitive, a good listener and is the reason that I got my diagnosis relatively quickly. She is the one that referred me to get the smart pill test. I stopped going to her for reasons over which she has absolutely zero control. The problem is that she is impossible to get ahold of. To reach her you have to call someone who will send a message to a secretary in another building who is then responsible for conveying the message to the doctor. This can take days and invariably the doctor would call back during the 10 seconds that I stepped away from my phone two days after I left the original message. And then I would need to start the process all over again.

This remains an issue. Mary still hasn’t heard back from the messages she left to schedule an appointment for me. And I remain technically a current patient of this doctor. But, using her magic powers as a nurse, she got the medical fax number of the GI and faxed all of my records directly to the doctor. The GI then scheduled an overbooked appointment for me on July 11th. There is a reason that I like this doctor, but Stony Brook is a state university and the bureaucracy is proof of that.

For those counting, I now have 4 GI appointments. Two in July and two in September. And Mary is not stopping there. Johns Hopkins is now out for several reasons, but I am ok with that because they turned me down after misreading my records, so I am unimpressed. Mary is now working on getting me into the Mayo clinic.

Unlike everywhere else, Mayo was on the ball and called me yesterday to do a patient intake with me based on conversations Mary had started with them. Unfortunately, she hadn’t gotten far enough to get me in and they told me that they weren’t taking any new patients. But now I have a patient number there and she is still working backchannels to get me in. They are the best motility center in the US, so they might very well be worth the wait.

In more fun news, this past Monday David and I went to a street fair in our neighborhood. It was a qualified, if seriously exhausting, success and we learned some important lessons. The most important being that as amazing it is that there is so much fun within easy walking distance to our apartment, “easy walking distance” is a relative term.

I may have very little energy, but I have been trapped in this apartment for nearly a year. And although covid wastewaster rates are up in our area, it is summer and there are all sorts of safer outside places to go to and I have no intention of letting that pass me by.

When I do get out, I am limited to the few block radius I can walk. We can drive or Lyft somewhere, but even then, I can only walk a couple of blocks before I need to take a rest while we desperately look for a bench for me to sit on. But no more. Today my brand new transport chair arrives!

With a shout out to my wheelchair using friends, who knew exactly what questions to answer before I even figured out how to ask them and some further research online, I got one with 12″ back wheels (the front wheels are 8″) that are best for navigating curbs and uneven sidewalks in addition to grass. And it is light and folds up nice and small so we can stick it in any Lyft or a cab if David gets too tired to hoof it home after an adventure. We sold our Prius, but kept our CRV, so there is plenty of room for it in our car. It should be delivered today, which will give us plenty of time to take it for test runs before the street fair at Astoria Park next week. Also, I will be giving David the honor of naming the chair because he will be the one doing the hard work.

Lastly, an update on my almost brand-spanking new pump. It is working so well that I forgot this was even an anomaly until Mary asked how it was going. I can comfortably say that that bit of stress has been resolved with having both an active working pump and a working backup should anything go wrong. It is nice to be able to cross at least one thing off the list of stressors.

Life with a chronic illness is incredibly unpredictable and some days it feels like my life is a game show. I never know what to expect until it happens. I can feel good, crappy, horrible and back all in a single day. It makes planning for anything really challenging.

It has been a really bad 3+ weeks. My pain and nausea have gotten progressively worse. My stomach feels like ground up hamburger and is bleeding despite the usual protective meds. As the nurse told me in the ED at my last visit, it is not venous bleeding, so I am not at risk of bleeding out (which would have been great had someone told us that at our first ED adventures last December, but whatever). This bleeding is more tissue. So definitively indicative of a problem, but apparently not worth anyone’s attention.

My GI is still essentially ghosting me. The essentially is that he did finally respond to my portal message, and suggested, rather vaguely, adjusting some meds (as in “we might want to consider X” and not “please try doing X”). But he continued to be unhelpful in any other way.

I did meet with the palliative care nurse, Alex and he has, thankfully, taken over my pain and nausea management. We basically followed my GI’s suggestions, which made it easy to start. But we also discussed other options and their various pros and cons for the future.

Funny aside, I noticed that Alex had an accent and asked him where it was from. He swore he had no accent, but it was there. Something about his inflection. Turns out he is a Soviet Jew that emigrated here when he was 4 after the fall of Soviet Union. I grew up around enough Soviet Jews that I am intimately familiar the accent of a NYC kid who grew up surrounded by Russian speakers. Turns out he lives just a few blocks from where I grew up. Sometimes I forget just how small a town NYC can be at times.

Lately, Xena Malka has been taking to waking me up around 5 or 6am when she starts to see me start squirming in pain. I give her some scratchies while I assess whether my misery is worth getting up and taking my pills and starting my flush regimen. Usually, I can assuage my pain enough with my heating pad that I can go back to sleep for another hour. This week, 9am has generally been the tipping point.

This morning I slept through until 8. I gave Xena Malka her scratchies and got up. Not because I was in horrible pain, but because I was hungry. When I am at my stable feed, hunger and I really aren’t conversant. I get a little bit of anticipatory hunger when David orders food and I know that I get my few bites of something tasty. But this was the classic, “I need nutrition” call.

When I feel really bad, it doesn’t matter how low my nutrition is. Any possible feelings of hunger get drowned out by the pain and nausea. Making feeling hungry a strange and unusual feeling, especially first thing in the morning.

I was feeling good enough that I expanded my morning 60ml flush (which includes one of the pain meds that I take through my J tube), to include 30ml of electrolytes. That may not sound like much, but when you are used to every ml towards maintaining adequate hydration being a victory, increasing one’s fluid intake so freely is worthy of note.

I was still thirsty after my 60ml of juice I took my pills with so I grabbed another 60ml of delicious watermelon juice, 2 mango avocado rolls, a heap of pickled ginger and a forkful of seaweed salad and went into the living room to start my flush. I cannot convey how extravagant I felt with this veritable feast in front of me.

The morning progressed well. The flush was uncomfortable, but not painful, which was a lovely improvement. The food was tasty and I still felt well enough afterwards to start this blog post. But then, the wheel spun and suddenly I didn’t feel so great anymore. But even that “not so great” was an improvement on how I have felt the past few weeks. So I took a 3 hour nap and I have regained my equilibrium enough to finish this post.

I am assuming that I can credit my adjusted meds for this improvement. And I am frustrated that I have had to wait so long to get this level of care. But the bottom line is that whatever is going on with me is getting progressively worse and that my pain meds are just barely keeping up with them. Even today, feeling better than I have in weeks, I do not feel like I can comfortably start increasing my feed rate. I am tired of this cat and mouse game and I am ready for some answers. And the only one who can help me get them is my GI.

One of the many benefits of having a Complex Care Coordinator is having someone who can persistently advocate for me, even when I am feeling like shit. And it is paying off.

Yesterday, after my GI continued to ignore my pleas for attention on the portal, I got a call back from the same on call doctor I spoke with last week. He was empathetic and provided clear instructions on the parameters for hydration that would keep me out of the ED. Parameters that we (by which I mean, largely David) have carefully abided by, keeping me appropriately enough hydrated to get to stay at home.

This week he and I had a good conversation about his limitations as an on call doctor, which, like the ED, are just to stabilize a patient until their actual doctor can treat them. Nevertheless, he really listened to my frustrations with my GI. He did ask the obvious question, if I was so frustrated with my GI, why didn’t I just switch to any of the many other GIs in NYC. I told him that I had appointments with 3 of them, but that the soonest I could get in was mid-July.

That was when he offered to send my GI a message on my behalf suggesting that I needed some additional attention. This is going to be hard on my GI’s ego and there may be some blowback on me. But I am relieved nevertheless. I finally felt like my frustration and pain had been validated and someone within the practice was finally up for advocating on my behalf. But this isn’t over. Not until my GI actually starts addressing the core issues.

In other good news, I think/hope my pump woes may be over. A woman in one of my tube feeding groups was selling her pump for a very reasonable price. She bought it brand new and had only used it for 2 months before a stomach surgery allowed for the removal of her feeding tube.

The pump has arrived and is currently charging. The test is when it gets put into play for tonight’s feed. Assuming all goes well, and I have no reason to believe otherwise, I will have a working pump of my very own. My current working pump will become my backup. And it will cease to matter that my official backup pump doesn’t work properly at all. This has been a low priority worry the past few weeks, but I am relieved to be able to cross something off of the list.

These past few weeks months years have been very hard on David. Tracking my meds, etc., does not play to his strengths. And the strain of the tightrope walk of whether my pain will get bad enough to warrant an ED visit (and we did get uncomfortably close to that happening just a couple of nights ago), or whether I will be up for hitting my hydration goals, are definitely wearing on him. But even he is feeling my good day.

His guard is down enough that he slept in this morning and just went down for a nap. David is not a napper by nature, so if he is napping, it is because he is truly exhausted. And I am glad that I can give him some time to recover. Chronic illness is a team sport that involves everyone you live with, whether they want to or not. Fortunately, 24 years ago I chose wisely. I could not imagine going through this without David. Even as I truly wish I could spare him all of the crappy chaos that is my life right now.

It has been over a week since I was discharged from the hospital, and I still have no answers. Fact is, my GI doesn’t seem particularly interested in the questions. Or much of anything really. I spent Thursday and Friday trying to get some answers from my GI about minimal hydration levels and when to know that I needed to go to the ED for hydration. I say “I,” but what I really meant was my complex care coordinator calling my GI’s office over and over again, trying to get a call back or an answer.

In the interim, she also tried to get me a home hydration order. But I am apparently too medically complex for someone to just show up with a bag of salty water for me. There needs to be blood work. And I just didn’t have the energy to face an ED again. But Friday night, at about 6:30pm (remember, we had been trying since Thursday morning to get an answer) the on-call doctor came through for us. He said, that if I could get 500-1,000ml in me a day, I could stay home. Thus kicked off Operation Hydrate Eva. It was not always pleasant, and it turns out that Pedialyte popsicles don’t always taste magical when you are not overheated and overtired and stuck in an ED. But we did it!

And we are still exhausted. I am increasingly able to take back some responsibility for my care. But David is far from off the hook. The anxiety and uncertainty of not knowing what is going on is absolutely draining. I have been able to maintain an increase in my feeds. So I am now getting <800 calories a day as opposed to <500 calories a day. But we are stalled there. And I don’t have 2 months of this in me. I have already lost 10lbs in almost 2 weeks.

Last night was the first night in a week that I didn’t take any benadryl at bedtime. I slept until 7:30am when the pain woke me up. I took a Tylenol and eventually was able to doze off again. But I haven’t really been able to get comfortable today. I have been doing my best to distract myself my from my discomfort. Thus this blog post. Unfortunately, the flip side of these energy intense distractions is only being able to pet a cat or read the book titles on the bookcase opposite me for a while afterwards because as much as I appreciate the break from the misery, they do exhaust me.

Today, my complex care coordinator reached out to a palliative care provider. A nurse practitioner whose sole purpose is to help manage pain and nausea. He works in concert with the medical team, leaving treatment to them, but taking responsibility for comfort. Something treatment teams are notoriously poor at. My hope is that if we can manage my pain, I may be able to increase my feeds, even without addressing whatever the overarching issue is. This particular palliative care provider doesn’t normally accept patients with gastroparesis unless it is secondary to something else. But he agreed to at least have a conversation with me.

In the positive news column, my gastroparesis has done something that David had failed to do on his own despite 24 years of trying. It turned me into a sportsball baseball fan. It turns out that baseball is absolutely what living with a chronic illness calls for. At least in my case. And despite being a native New Yorker and living in Queens, I am a Red Sox fan by marriage and therefore a red Sox fan*. And as long as that means that I loathe the Yankees with a deep and abiding ferver, I think that makes it ok with my family of origin.

*I may officially be a Red Sox Fan, but I reserve the right to wear my Portland Pickles and my Exploding Whale jersey to sportsball baseball games.

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.

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.

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.

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.

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.