Month: April 2023

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.

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.