Category: Gastroparesis

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.

If you recall, I have been struggling with intestinal pain, particularly when I am ingesting anything, orally or through my tube. A couple of weeks ago my GI put me on a round of antibiotics for a presumed case of small intestinal bacterial overgrowth (SIBO). There were no follow up instructions , but we had left TPN on the table as the next step.

Fast-forward to yesterday morning. I sent a portal message to my GI with an update as to my status of “better, but still unable to increase my feed.” In response, I got the following message, with names redacted.

“Your message has been forwarded to Dr. P and Dr. K who are the covering Doctors. [Your GI] is away this week and will return on Thursday 7/6. As per Dr. P, you will need to wait for {Your GI] to make any major changes because she and Dr. K do not manage feeding tubes.”

Clearly, Mary’s nudges have been paying off. I sent a portal message and someone read it and responded right away. Unfortunately, they responded with a “you are on your own, kid.” kind of message. Leaving me, and my pain and malnutrition, with no where to turn.

My GI gave me no advance warning that he would be out of the office. Which leaves me with a quandary. I can’t go to anyone who is covering for my GI because I have a feeding tube. I can’t go to Urgent Care because I have a feeding tube which makes everything the responsibility of the Emergency Room. But, the Emergency Room won’t deal with me because I have a G/J tube. I can get admitted, but they only deal with the most acute issues. If it is something chronic, they send you back to…your GI.

See the problem here? Sometimes I even forget that I have gastroparesis. Instead, I feel like my tube, Etisarap is my ailment instead of my savior. She feeds me. She is the reason I am still around to be having these conversations at all. She is not the cause of my misery. But she is the hot potato that means that nobody wants to deal with me. Leaving me out in the cold.

When my father had a very minor form of lymphoma (minor because they caught it super early–get your cancer checks, kids), he entered the world of the Cancer Center. The price of admission is high, but he entered a world where his health care was well coordinated for the rest of his life. Regardless of remission status.

I dream of getting that kind of care. A system where doctors communicate with each other and have colleagues that they can work with when a patient has medical devices like feeding tubes that they are not familiar with. That being said, I would much rather stay out of the cancer system completely. Forever. But I envy that kind of wrap-around care.

If I am struggling this much in NYC, with a plethora of doctors, imagine how my fellow tubies who live in smaller towns in the US are faring? It is not good. And it is only going to get worse. And yet, I no longer have a choice. I must live in this failing medical world.

Back in the last millenium, the 1980’s to be precise, there was a show called “The Greatest American Hero.” A high school teacher stumbled upon a super suit that endowed him with certain powers, most notably, flight. But it didn’t come with a manual, which resulted in the guy regularly falling out of the sky. He kept hoping he would get the hang of it, but every time he managed to sort of master one thing, he completely failed at the next. Friends, that is how I feel about life with Etisarap right now.

I have reconciled myself to the fact that I am on my own until I find a decent GI. I am not getting myself all psyched up about any of my upcoming GI appointments. That takes too much energy and being let down like last time is more than I can cope with. Instead, I am focusing on each day as it comes. That should give me plenty to occupy my mind.

When last heard from, I had essentially flipped the bird at the new GI I saw on Tuesday by upping my feed to 27ml/hour. TL;DR: that was a bad call.

Friday was A Very Awful Day. I could not stop crying. In general, I am not much of a cryer. Before gastroparesis, I would go months without crying. I really only cry when I am frustrated or when I am in pain. And on Friday, I was both.

Seeing how miserable I was, David suggested that perhaps I might want to switch my feed back to 25 and see if I was more comfortable. To say I was resistant would be an understatement. He pulled out the big guns and reminded me that we were going into the weekend and the next step for me was to go to the emergency room. There is nothing more horrifying to me than the prospect of having to go to the ER on the weekend! I switched my feed back down to 25. And I got better.

Not big B better. But I stopped crying and was able to think again. As well as a malnourished Eva can think. Which also meant that we were able to go to the Astoria Pride celebration yesterday. It was a completely exhausting endeavor, and totally worth it.

One of the reasons I selected Astoria as our landing place was because it has a real community feel. People here identify strongly with Astoria and are proud to be raised here. That sense of community was strong at the Pride celebration yesterday.

There was a real small town event, with local performers raised in Astoria and training at the local dance studio. A dance studio right by our apartment where you can peer through the velvet ropes (I kid you not) put out during lessons and you can see young women and men learning traditional dances including how to dance with a wine bottle on your head!

To round out the small town feel, the festivities included a tug of war and pride bag races (rainbow potato sacks). It was absolutely the low key, fun, enjoying laying in the sun kind of day I think we both desperately needed.

But it wiped us both out. I only stayed awake until my normal bed time because I needed to disconnect and reconnect to my feed, take my meds and do all of those other responsible things. Otherwise I would have crashed for the night the minute we got home at about 5pm.

Today is a rest day for me. At least I hope it will be. Xena Malka woke me up early this morning because she is the most neglected cat ever and we dared to leave her alone for 3 hours yesterday. I definitely see at least one nap in my future.

David has big plans today. He will venture to Brooklyn for the first time since we arrived in NYC for a Brooklyn Cyclones game. My father would be so proud. He is going with a group from the local Reed alumni group. We missed reunions, but at least he will get to hang with some Reedies and enjoy an afternoon of sportsball.

David has been seriously craving ocean, beach and palm trees for YEARS. I told him that he could go for a walk on the beach after the game. But sadly, I couldn’t offer him any palm trees. Apparently, Brighton Beach wasn’t exactly what he had in mind.

Tomorrow, we reach out to my current GI and give him an update on my status. I finished my course of antibiotics. Maybe they helped, but it is hard to say. Only thing we know for sure is that moving up my feed to 27ml/hour is not viable. Then we see if he chooses to respond. But I think it is unlikely.

I am in a dark and cramped place. An oubliette, perhaps? Unlikely, but I have always wanted to use that word in a sentence. I am feeling very trapped in my body right now. We, by which I mean me, are really in need of some time apart. I am desperate for a vacation from myself.

I am too malnourished to escape my reality, and I am desperate to do so. I cannot read more than a short form article. Basically, social media. But that is such a grim place to be. Algorithms bury the 90% of my feed that is fiber and instead all I see is BBC, The Guardian and The Washington Post. Oh, and ads. Lots and lots of ads.

I have tried games, but even the simple ones overwhelm me with ads. Ads for sales on things that will allow me to keep playing my game. So I give up.

I watch music videos. My perennial happy place. But I start to get tired and reality starts seeping in around the edges.

I smoosh my face into Dancer, who can see my tears and comes to comfort me. And I hide from the world in his warm fur, feeling the vibration of his purrs. And all is right with the world again. For a few minutes. Then he moves to my lap. Or David’s. And my reality comes crashing back like a tsunami of physical and emotional pain.

Help isn’t coming. Five weeks of starvation and I am on my own. My body has failed the test by hoarding its resources. That may have been how my ancestors survived bouts of famine, but it is a fail-able technique now. So no help for me.

I upped my feed to 27ml/hour, and have toughed it out for 36 hours. And will tough it out as long as I can. But it is taking an awful lot of pain medication to do so. I was at 54ml/hour just a few months ago without even a Tylenol. Something has changed, but no one seems to care what or why. Because I am only starving — what could possibly be wrong with that?

See why I need a break?

I wish I could disappear in a drunken stupor. But even if alcohol weren’t seriously contraindicated with my medication, it is hard to get black-out drunk in 60ml increments every hour or so. So that’s out.

I went downstairs to get the mail. But my body insisted on coming me with. We returned unreasonably tired and hungry.

We ate a few bites and it hurt, so we stopped. Then felt regret because, despite not being able to eat, my eating disorder is fully activated right now. It has been quiet for a while, but Tuesday’s appointment released the beast from its cage. So that is adding to the emotional exhaustion. Fun times.

All the cliches say there is no way through, but moving forward. But moving requires energy I don’t have. And help isn’t coming.

Last night there was an incident during the sportsball game that perfectly captures my experience with the GI yesterday. Justin Turner was up at bat and a pitch was coming right at his face. He avoided it by hurling himself to the ground.

The commentators then explained that he had been hit by a pitch at training camp and that was why he added the protective face cover to his batting helmet. They went on to explain the psychological challenge of having just almost been hit in the face by a ball hurtling towards him at 80+ miles an hour, and then having to recenter himself to be ready to face another pitch in just a matter of a few seconds. And just as they got those words out, the next pitch hit his body. That was my day.

I knew the minute the nurse came in to take my vitals and get my weight that it was all over for me yesterday. I naively thought that once I got my G/J tube and my intake was entirely managed by medical professionals that I would be free from the tyranny of the scale. I was so horribly wrong. And in this case it would bite me in the ass. Hard.

You see, there was a 30lb discrepancy between my scale at home and the scale I stepped on at the doctor’s office yesterday. But it is not as simple as our scale being miscalibrated.

There is something going on with my body size. I have to wear my clothes very loose because my abdomen is so hypersensitive to touch. My favorite pants have a drawstring, and I recently had to tighten the drawstring to keep them up. But I also have, on occasion, what I refer to as bloat, where my lower abdomen gets noticeably bigger and my normally comfortable pants get a bit tighter. Yesterday was one such day. I share this to contextualize how David and I may have missed this weight discrepancy. But even I struggle to fathom toggling 30lbs from day to day. But I have ordered a new scale and we are moving on.

Honestly, I still don’t believe that this should have made a significant difference to the doctor. The fact remains that based on my nutritionist and my GI, I should be on four cartons of my formula a day. I am currently on 1 and 1/3rd and have been for 5 weeks. In my mind, that fact alone should be enough. But yesterday’s GI’s bottom line was that my BMI did not warrant an intervention at this time. I was simply too fat to warrant adequate nutrition.

Both David and I tried to explain how the weeks of malnutrition were noticeably impacting me. But she had not reviewed my records in advance. She had seen them, because she complained that they were sent in hard copy and not electronically. Which is an artifact of Mary having had to painstakingly collect them from a variety of systems, with only a couple being cross-compatible with each other. But that should not be a me problem.

It wasn’t just my weight. The GI came in to the room with an attitude and was not positively disposed towards me from the start. Early on, it became apparent that she thought I was a hypochondriac or doctor shopping or both. She had no interest in my attempts at explaining why I had doctors in Vermont and Stony Brook and Manhattan. In fact, she was more interested in my psychological issues, even asking for the name of my therapist and asking me if she could contact her. That was a huge red flag for me. Who asks to speak to your therapist?

She also questioned my diagnosis of gastroparesis. She asked multiple times why I didn’t have a gastric emptying test. I tried explaining that I had a smart pill test and that it was the industry standard. I decided not to point out that the Mayo Clinic had been confident enough in my diagnosis, but then again, they had read all of my medical records. Also, why ask a patient why she had not had a specific test? Its not like I get to control what tests get ordered.

The most engagement I saw was when the GI asked to look at my tube. She had brought a nurse practitioner into the room with her and was carefully teaching her about my legacy connection and how enfit connectors are better and how mine was a tube within a tube. I took that moment to interject how this was actually my third tube and how I had had a negative experience with an enfit tube. She looked at me like I had interrupted her during a lesson and challenged me about what I meant by two side by side tubes. She then happily went back to explaining my tube to the nurse like it wasn’t attached to a person.

As we neared the end of the exam, she asked outright what my goals were for this appointment. I said, point blank, nutrition. She said that my BMI didn’t warrant intervention at this time, ordered a bunch of labs and told me to come back to see her in a month (but we couldn’t get another appointment with her until October). David tried pleading with her, but no avail.

We had told her that I was seeing my GI in Stony Brook on July 11th and that I had another appointment with a different GI later that month. She said that I was welcome to see as many other GIs as I like, but that they would only give me band aids. She would get at the cause of the issue.

Some of my early labs have come back (I love patient portals) and some of the numbers are off. I am curious to see if she contacts me about them or not. My current GI has a habit of ordering labs and then not closing the loop with me, so I am not holding my breath.

Clearly help is not coming any time soon. And I remain adequately upset by yesterday’s interaction that I feel physically numb. At least, unless I deliberately try to check in with my body. This is my eating disorder in action. It is how I have been able to deliberately starve myself for years. But for once, it has actually proven to be useful. Last night I tried raising my feed from 25ml to 27ml per hour. It is uncomfortable, but tolerable. I was able to sleep until 6 this morning when my psychological distress woke me up. That bought me the time I needed until my pain meds kicked in. So I guess, in the end, she helped me with my nutrition after all.

It has been 5 weeks since I was weighed during my hospital stay and I am now down 27lbs. I have also crossed a once impossible milestone. I now weigh less than the “ideal” weight, based on BMI, that has been plaguing me on my medical records for decades. I am also the sickest I have ever been.

Even my nutritionally-challenged mind knows that I was so much healthier, nearly a hundred pounds heavier, pre-pandemic, when I was in the best shape of my life. I was going to the gym regularly, doing a combination of yoga and weight training, I had the best abs I have ever had. And yet, all I could see was this nearly impossible goal weight that I would never be able to reach.

I am feeling incredibly vindicated in my belief that the only way that I would ever reach this weight was to starve myself. All it took was literally starving myself. I didn’t get there on my stable, but inadequate nutrition, with my tube. No, I needed to literally hover at 800 calories a day for 5 weeks to reach it.

I had thought, or rather hoped, that tube feeding would be the end of my starvation. But the past 5 weeks have proven that theory wrong. And while I am no longer as good a thinker, or even as articulate as I once was (and hope to be again), even I know that there is something seriously wrong with this picture.

I cannot think straight. Moving even a finger is so hard that I feel as if someone turned up the gravitational force on the earth. I have lost my lifelong earworms and I can no longer pull up a quote or lyric in a heartbeat. In fact, listening to music has been reduced to uncomfortable labor. It is just exhausting to try to pay attention to both the melody and the words at the same time.

Quite simply, I no longer feel like me. I have become a struggling shell of a person just trying to get through the day so that I can go to bed and shut it all out for a while. But I have reached my fucking goal weight. Where is my promised prize of everlasting happiness?

Yes, I am angry. Nay, furious. Well, I would be if I had the strength to work myself up that much. I have proven that a number is just a number and that health is so much more than what one weighs. But it is a shallow victory. And one that will do little, if anything, to the lifetime of gaslighting telling me otherwise. Fortunately, now I have therapist and I can work on this with her*. Seriously, this is exactly why I worked as hard as I did to find my phenomenal therapist who used to run an inpatient eating disorder clinic. I knew I had issues.

Tomorrow is my very much anticipated appointment with the GI who specializes in enteral (tube) feeding. Starvation has left with me with 0 filters (if you doubt that, just reread this post) and I have shed many tears in anxiety and fear about how it will go. Will she be empathetic and curious? Or will she willfully ignore my pleas convinced that she knows best?

My rational brain (aka, David and Mary, my complex care coordinator) keeps reminding me that even if this GI doesn’t work out, I have four additional appointments with different GIs on my schedule. And if none of them work out, Mary will keep searching.

My next GI appointment, on July 11th, is with my GI from Stony Brook. Although not a motility specialist and I have no idea what, if any, experience she has with enteral feeding, that GI is empathetic and curious. She is a committed problem solver who ruled out everything else before leading me to the smart pill and my ultimate diagnosis. If only her state-run admin was anywhere near as effective.

Bottom line, tomorrow is not the end of the road. But I honestly don’t know how much longer I can go on like this. Starvation is draining in a way that my non-functional mind cannot articulate, although I desperately want to. I want you all to understand just how difficult it is to function in the world when one is starving. Even baseball is too fast a game for me these days. Does that help?

Even my non-sympathetic and unconcerned GI grudgingly admitted that TPN (IV nutrition) would be the next step if the antibiotic didn’t resolve the pain enough that I could increase my nutrition. I could be taking comfort in the fact that there is another option besides enteral feeding to give me nutrition. But the uncertainty and anxiety is getting to me and I simply don’t have the nutrition to process much of anything beyond these raw emotions.

*Not even starvation can kick Trekkie Monster out of my brain.

Mary, my complex care coordinator, has been working hard to get me seen at the Mayo Clinic in Rochester, MN. They are the best motility center in the country. She was making great progress. We had gotten me to the point where I had been assigned a doctor and they were beginning to send me travel information. And then this morning, the axe dropped. I got a message saying that after reviewing my extensive records, there was no test, or treatment that they could offer me.

I was disappointed, of course, but it makes sense. My team of doctors from Vermont, Stony Brook and NYC, all ran all of the appropriate tests to rule everything else out first. Ultimately, I was diagnosed with a Smart Pill, which is the state of the art test. And my results showed that I have severe gastroparesis. Severe enough, that even if you cut my transport time in half, I would still have severe gastroparesis. And as there is no treatment or cure for gastroparesis, there is nothing more that they could do for me than is currently being done

In other words, I just got a free second opinion from the Mayo Clinic confirming my diagnosis is correct. And that, as much as there is no treatment for gastroparesis. only symptom management, he has handled that correctly too. Thus is life with a rare, incurable disease. Welcome to the frustration that is my existence.

Yes, there are some marginal interventions available for gastroparesis, like a gastric stimulator, or surgery to prop open your pyloris valve. However, neither would make a difference in my situation. They don’t tend to work well in cases of idiopathic gastroparesis like I have.

This is not the end. I see it as simply a confirmation of my diagnosis. Moving forward my goal continues to be on improving my quality of life. I still have my slew of GI appointments on my calendar to help me address my acute misery and feeding issues.

Today is a day filled with feelings, so that is what today’s post is all about. Something is working. Either the increased pain meds or the antibiotic or both. I am not comfortable, but nor am I am in pain. At least not when the meds are in full effect. There is still some pain as it nears time to re-up. Regardless, I will happily take discomfort over pain.

When browsing through chronic illness shirts and stickers–hey, a girl has got to have her hobbies– I see a lot of “warrior” language. Let it be known here that I am not a gastroparesis warrior. I simply don’t have that kind of energy.

I have a pin on my backpack that says “being strong was never optional.” I have no choice but to be strong. Literally. When I felt myself beginning to die from malnutrition many months ago, I felt a literal compulsion to stay alive. That is when I knew that I no longer had a choice but to put everything I had, ever last iota of energy available, towards staying alive.

And that strength made me effective, as my complex care coordinator continues to remind me. She continues to be impressed with how well I navigated arcane bureaucracies, intransigent gatekeepers and even incommunicative doctors . And that means a lot coming from someone who does this professionally.

But that strength comes at a steep cost. And I am fully and deeply aware of how privileged I am to have someone like Mary to take the reigns. Because I honestly am not sure that I could muster the kind of energy I would need to take over that coordination right now. I am just so exhausted every day. Exhausted by malnutrition stretching on over a month, exhaustion from my pain and exhaustion from a complex and confining medication regimen.

I loved my excursion this past weekend. But it also wiped me out. We, by which I mean mostly David, shepherded my energy well. Reminding me that the more I walked enroute to the second festival, the less energy I would have at the festival itself. David was right. I spent my energy exactly where I wanted it and had a marvelous time doing so. But I haven’t had the energy to even leave the apartment since. And I probably won’t for another day or so.

I am taking a break from watching The Tony Awards to write this. I had a little meltdown because I realized that even with my transport chair, I do not have the energy to see any kind of theater. Not when a stroll through the park and a couple of festivals wipe me out for days.

But, I have a much anticipated appointment with a GI in exactly a week. And she has the experience to help me up my nutrition. So I am actually feeling optimistic, even if it doesn’t always feel like it. There is just a lot for me to reconcile on a daily basis. And that takes a lot of my very meager energy.

Yes, I am strong as I need to be. And right now, barring any unforeseen disasters, all of my strength is needed to simply getting myself through the day.