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.
Being able to run errands by myself. It is nice to gain some independence back, even if that independence is limited to a 4 block radius.
Being able to walk 3/4 mile and go to 4 stores and come home with enough energy to disconnect from a feed and write this blog post.
Knowing that even though the walk will exhaust me, my nutrition is stable enough that I can rely on my energy returning after a day or so, with no long lasting impacts.
Being able to get David a treat for a change. This one is important because he will never say no when I ask him to get me something, and he is long overdue for some reciprocity.
Living in a place with enough single people that local bakeries make mini Irish Soda Breads. I love Irish soda bread, David is appropriately partial to Irish Brown Bread, so I have traditionally eaten the whole loaf myself. This year I can do that again, given 5 or so days.
Feeling good enough to go out when the weather is good. There have been a couple of super windy days this week when I would have gone out but for the weather. But today was a lovely, warm day.
Trusting my body when it tells me when that it is time to rest.
Happy St. Gertrude’s Day, have a good weekend, a Shabbat Shalom and a very happy birthday to a puppy who turns 3 today.
This week I had an edifying conversation with someone who was on Total Parenteral Nutrition (TPN) for 19 years. TPN is a level up from enteral nutrition (what I do) because it bypasses the digestive system completely through IV feeding. This method has a much higher risk of dangerous complications due to infections and can cause kidney damage. But it can also be a literal lifesaver.
She does not have gastroparesis and has been able to eat normally, for the most part, for over a decade. She offered to answer whatever questions I may have and share her experience with me. I found her experience to be incredibly helpful in understanding the void of information that I have encountered.
Back in the day, when she first got set up with TPN, the supply company provided a team of nurses to support her. She had a number to call if she had any questions and if necessary, a nurse would come to her house to take care of whatever was the issue. If a doctor needed to be involved, the nurses spoke directly with the doctors and implemented whatever the orders were.
In the ensuing 30+ years, those nursing positions were cut and are now virtually gone. A major supplier just laid off almost all of their TPN nursing staff. Enteral feeding is much less dangerous, so it make sense that those positions were cut long ago. My supplier closed their only physical location in NYC during the pandemic.
Not only did those nurses lose their jobs, but their roles simply fell through the cracks. But no one on the educational side of the equation changed their content or training methods. It once made sense to have doctors only focus on what fell squarely within their domains. Like learning to just put in a tube without learning about stoma care. That is no longer the case.
This week someone in my gastroparesis tubie group badly burned her skin because her doctor gave her silver nitrate to burn off her granular tissue (a normal part of having a stoma) and told her to watch YouTube videos to learn how to apply it. After she watched the videos, she remained confused and called her doctor for assistance. Her doctor gave her some more YouTube links. She did her best and now the skin around her stoma is a greyish/black (I know because she shared photos that were really very gross–but she put them in a comment so I actually chose to look at them) and she can’t get in to see her doctor for 3 weeks.
Hopefully, by now you know that this kind of responsibility hot potato is an issue for me too. But, I also now have just the tiniest taste of what used to be now that I have added a stoma nurse to my team. My poor, abused stoma is still healing from… everything. Last week my stoma nurse gave me some instructions that I followed to the letter. This morning I looked at my stoma and it was a bloody mess. I was sure that I had done something horribly wrong. I texted her pictures and a plea for help.
In return, I got an encouraging and helpful text explaining that this is actually what healing looks like. She told me exactly what products to buy and gave me some follow up instructions. I immediately felt calmer and ordered everything I needed from the Behemoth of Seattle.
During our conversation, I told my friend about how those both on TPN and enteral feeding are now left completely on our own. She was, unsurprisingly, appalled. She also immediately understood just how much more traumatizing it is now to become a tubie. She knows exactly how confusing and terrifying adjusting to life as a tubie is. But she was fully supported and didn’t have to expend anywhere near the energy to get her questions answered or the care she needed. She was able to use that energy to raise her kids and go back to work rather than an endless cycle of phone calls without answers.
I haven’t even gotten to the most fundamental take away from our conversation. Perspective. I have been told repeatedly that once I get to stable nutrition, I will get back my “me-ness.” But no one has gotten specific on how long that should take. I know I am not fully back yet, but what I didn’t know whether or not this is where my new normal is. After all, I have had stable nutrition for weeks now. Well, except for those 4 days with no nutrition after the month of hell. But time passes so slowly to me that even though that was only 3 weeks ago, it feels like a year to me. And in that “year” why was I not feeling better?
Having been through a similar 2 years of starvation before getting her TPN, my friend reassured me that what I am experiencing now is just the tiniest taste of what is to come. My body has been malnourished for years. How could it possibly recover from that in a matter of just a couple of months? She reassured me from the other side of this recovery that it will happen. But it will take much, much longer. Maybe even a full year.
I am much too impatient to wait for a year to get back to myself when just a few weeks feels like a year to me. But this one is not up to me. My poor body has been through the ringer and I owe it to myself to give it the time and space it needs to fully heal. The most important thing I need to keep reminding myself is that I will not feel this way forever, even if it feels like it. I will continue to heal, albeit slowly, as time marches on. All I ask is that you all continue to be patient with my recovery.
Despite my occasional pessimism, I am making progress. Our elevator is functioning again so yesterday I ran errands with David. We went to the UPS store and picked up an Rx for me. And I walked .7 miles in the process. It did make me tired, but it was the good kind of tired. The kind of tired that makes me want to continue to slowly build my endurance. Emphasis on the slowly, because I am definitely not up to going back out today. Still not the previous kind of tired that would cost me days of recovery.
I finally got my relatively quiet week. I am at a sustainable level of nutrition, albeit it not my nutritional goal. I am now very slowly ramping up my pump speed so that I can increase the volume of my formula to my nutritional goal, while still giving my small intestine enough rest time between feeds.
David and I used the opportunity of a quiet week to adventure out to the kosher bakery to pick up hamentaschen and enough baked good to last me the month until Passover. I mean that literally, since many days I end up having to split a cookie with David. Except for the bow tie/egg kichels. Those are so nice and light that I can eat an entire one myself. And they are simple enough that they can settle a fussy stomach. They are my wonder cookies.
Our elevator is still out, so that adventure had me going down and up the stairs. And a few days later, I repeated the feat when I went down to get the mail. Not because we were expecting anything interesting. Just because I could.
I am perfectly aware that one good week does not mean that life has stabilized. I am still regularly venting blood and my stoma still bleeds daily. But I also now understand that these things are considered to be normal. But with nutrition comes brain function, and I am just now beginning to struggle with the questions that I have been unable to answer for the past 2 years.
In an article about a group of sociologists from Columbia analyzing an oral history of Covid, The New York Times defines ontological insecurity as “[the limbo that makes it] impossible to break out of that malaise, to project oneself into a future that [keeps] evaporating ahead of you.” This is a perfect descriptor of where David and I continue to dwell. We are still hesitant to make any commitments more than a day in advance because the ground doesn’t yet feel stable beneath our feet.
But time is relentless and Passover is coming whether we want it to or not. And that is forcing an issue that I am not quite sure that I am up to facing quite yet. What does it mean to navigate the world as a non-eater? More relevantly to this post, how do I do Judaism as a non-eater? As I have said before, I am not big of davening (prayer). Some of that is simply because I am my father’s daughter, and study is our preferred connection to Judaism. But a not insignificant issue is my baggage from having grown up sitting behind a mechitza (a divider separating the men from women during prayer). But that is trauma for another time.
Judaism is really big on food. And everything from holidays to life cycle celebrations to mourning each come with their own designated meal. Food prep has always been my go-to on-ramp to Judaism. It has been integral to how I celebrate holidays. The beginning of the month of Elul, a full month before Rosh Hashanah, is when I traditionally start thinking about what to make for Rosh Hashanah and the meal before Yom Kippur. I have more than a decade of meal ideas and their associated shopping lists on my phone.
Passover is a particularly difficult time to figure out how to navigate the world as a Jewish non-eater. Most food traditionally eaten on holiday are simply customs. But on Passover, eating Matzah and maror (the bitter herb) are mandated. The good news is that the required amounts are small enough that even I can eat them. The problem comes with the meal that is an integral part of the Passover seder.
I am too early in my journey as a non-eater to sit through a long, multi-course meal, even one that happens during a seder. Just thinking about it is overwhelming and upsetting. It immediately brings all that Gastroparesis has taken away from me to the forefront of my mind. Just writing this paragraph has me crying. How I am supposed to make it through a whole meal when the grief is still this fresh and raw? I know there is so much more to unpack about being a non-eater in a world where food is so central a focus. And I haven’t even begun that process.
I have polled my fellow tubies on how they navigate formal festive meals. The response was mixed, but their responses can be boiled down to it not being easy. They all mention the double punch of the psychological grief and loss and the physiological response of nausea and discomfort that comes with eating.
David and I are still deeply in a state of ontological insecurity and Passover feels impossibly far away. We are most certainly not yet in a place to make plans. But I am fairly confident that we are going to maintain what has become our Covid tradition of having our seder at home with just us and our cats and connecting virtually to our friends and family. I just don’t think we are ready for anything else yet.
Today, the last day of the shortest month, has been designated Rare Disease Day. And in honor of that, I am sharing this article by a pre-med student on the challenging dynamics between patients with rare diseases and their health care practitioners.
But first, a quick summary of key points:
“Research shows that over 87 percent of rare disease patients feel unsupported in their care due to a lack of trust and communication with their HCP compounded by the provider’s lack of knowledge.”
“…in most cases, HCPs do not possess sufficient knowledge of the rare disease to make an effective recommendation. As a result, patients with rare diseases find themselves experiencing a patient-directed communication pattern, in which they are forced to acquire knowledge of their disease on their own while physicians act as passive participants, predominantly providing consent for treatment that is first advocated for by the patient.”
David and I continue to live in hope for a week in which I manage to avoid any issues for which I do not have an answer. Unfortunately, this past week was not that week.
While I was slowly recovering from the trauma of the previous week (in which I got two tube changes and couldn’t feed for 4 days), I noticed that I was venting some formula through my stomach. The formula goes straight into the jejunum, so it should never appear in my stomach. For some unknown reason, some of the formula is being backwashed from my jejunum to my stomach.
I checked to see if my tube had flipped by putting blue gatorade into my J tube and seeing if there was any blue in when I vented from my G tube. There was not. Fortunately, I happened to have an appointment with my GI on Monday, so I waited to ask him then. He ordered an x-ray to make sure that my tube was not kinked or twisted.
The next day it took me more than a solid hour and a half of phone calls and emails to get the x-ray scheduled. Apparently, no one quite knew what a PEG tube x-ray was even though the order clearly said abdominal plate. Eventually, I got it scheduled for Friday.
Friday morning, I pulled together all of my strength, walked down 5 flights of stairs and walked the half mile to the local hospital along the way. Fortunately, our neighborhood has lots of benches and bus stops, so I was able to rest several times along the way.
When we get to the hospital, the usual outpatient entrance is closed for a press conference. So patients get to walk the extra hundred yards or so to the other entrance. That may not seem like much, but it took everything I had to put one foot in front of the other at that point. And there is not a single seat in front of the hospital. Not even in front of the patient pickup and drop off spots that were occupied by vehicles from the “special” people at the press conference. Heaven forfend someone leaving the hospital might need to sit down while waiting for their ride home.
I managed to drag myself to the further door, the, inside the building, walked back the same extra hundred yards to the elevators to the outpatient testing. I collapsed into the nearest chair as soon as we got into the waiting room. A waiting room with 8 or so people in which no one had their masks up.
Nevertheless, the ill tempered registration woman made us fill out an outdated Covid intake form (including the question “Have you or anyone in your household been out of the US in the last 10 days?”) And they meant it, because even though I had uploaded my vaccination card into their system at a previous appointment when such things still mattered, she insisted on David telling her whether my vaccines were Moderna, Pfizer or J&J. Did I mention that no one had their masks up?
Anyway, I get into the x-ray room and the tech is positioning the x-ray on me and I suggest that she aim the camera a bit higher to get the whole tube in. She ignored me, took the first shot and then came back to adjust the camera because she assumed the doctor wanted an x-ray of the whole tube. Fortunately x-rays are now instantaneous, because I would have been furious if I had had to come back and redo it.
X-ray done and knowing that I still had 5 flights of stairs to walk up, we took a Lyft the half mile home. David almost got hit by one of the drivers of the VIP vehicles occupying the patient pickup and drop off spots when David tried to cross the street to verify that the car there was for us (there was another patient also looking for his Lyft).
I made it home, safe, sound and exhausted. I am actually irritated by how sore my legs were, so I am planning on reinstituting my stair walking regimen so I can build up my endurance.
On Saturday we got the “results” from my x-ray. Although the order was for an x-ray of a PEG tube, the tech decided that the issue was bowel gas, which he deemed to be normal. This morning my doctor looked at the x-ray and declared it to be fine. I still have the issue with the backwashing and he suggested a med adjustment.
This morning I have an appointment with my Registered Dietician because he wants her to weigh in on my nutrition. This is a bullshit appointment because we are going back to her original recommendation based on the higher calorie formula that he vetoed 3 months ago. Nothing has changed. But instead of just going back to her original recommendation, I get to pay for another appointment within the same practice to get the exact same answer. And when this is done we get to submit the exact same order to the supply company and see how long it takes to get that approved.
Also, at least week’s appointment I had the opportunity to ask him, once again, to include Farrell bags in my order. Farrell bags are bags that I can attach to my G tube port and vent into directly instead of having to hold my tube open over a bowl if I don’t want to stand over the sink all day to vent. I had asked him for Farrell bags in past emails. The Registered Dietician who put together the last round of orders included them in her order that she just asked him to sign. He didn’t. He insisted on redoing it his way.
Turns out he just didn’t know what Farrell bags are. Although he had several opportunities to do so, he never bothered looking up what they were and just ignored them when he encountered their mention. He did say to remind him to order them this time. We’ll see how it goes. I am not holding my breath.
In other news, I have found a support organization for rare diseases. The incidence of Gastroparesis diagnoses in the US is 0.16 out of 100,000 people. There have been past efforts at Gastroparesis-specific support organizations, but they have all collapsed into a collection of Facebook Groups. While no one rare disease has enough patients to pull this off on their own, you put us all together and we amount to something.
Anyway, this organization has a free concierge service to help connect patients with doctors, centers of excellence and clinical trials. I already have some trackers on clinical trials for Gastroparesis, but it never hurts to have more feelers out there. I submitted a request and am just waiting to hear back.
They also have a cool program where they connect medical students with people who have rare diseases. The program is designed to help build empathy for the outliers like me by connecting students directly to the patient experience of those of us who fall through the cracks. I submitted an application for that too, but they do not guarantee a match. It all comes down to whether gastroparesis catches a student’s eye.
Not many people know this, but before the pandemic hit, I had gotten frustrated with working in public service in a world where the usual rules no longer applied. As the ADA officer for the City of Plattsburgh and as the leader of Plattsburgh Girls Who Code, I kept running into situations where accessibility was not just ignored, but seemingly deemed irrelevant. So I decided to pivot and shift to working in the field of accessibility.
I mentioned this interest to a friend who introduced me to the International Association of Accessibility Professionals (IAAP) certification process. I rigorous exam assessing one’s knowledge of various kinds of disabilities, accessibility tools and international accessibility laws. I received my certification and had started looking for work when the world shut down.
During the pandemic I looked into getting a certification in Diversity, Equity and Inclusion from Cornell to round out my credentials. But that never happened because I got sick. I almost lost my IAAP certification because I didn’t do all of my continuing education hours, but being the organization they are, they gave me an extension due to my illness.
I mention all of this because I want to be clear that my complaints about accessibility issues do not stem solely from a place of self interest. Rather, they are informed by education and experience. And should I ever be healthy enough to work again, this will have always been the direction I was going.
I spent an inordinate amount of time this weekend studying my x-ray just trying to wrap my head around the anatomy. While it is nowhere as cool as a brain MRI, it is sufficiently cool that I am sharing it in case anyone else wants to geek out.
Hi all, this is David (Eva’s spouse) with a guest post.
In response to recent posts, we’ve been getting so many offers of help. We’ve received so many suggestions. And we’ve very much appreciated everyone who is trying to make our lives better.
We have politely declined most offers because we have mainly got things running about as well as we can for us. Eva’s blog is fundamentally a way to keep those who care about us informed. We so appreciate well wishes, sympathy, etc.
Here’s why helping us is hard: gastroparesis is a rare disease. No one knows much about it. Those who suffer from it know a fair amount about their experience of it, but that also varies widely from individual to individual. With rare exceptions, doctors who list expertise in gastroparesis have read less of the academic literature on the subject than Eva, or have expertise in treatments for which Eva is not a candidate.
People have offered to make phone calls for us to interface with insurance companies, etc. The amount of education we would need to do to get you up to speed is impractical. For the most part, even I, David, can’t make those calls for Eva. Yes, I have been present for most of Eva’s doctors appointments. I have heard most of the calls with the home health provider. But not all of them. There are important gaps in my knowledge that mean I am likely to give bad information, possibly setting the whole process back weeks or months.
Finally, we are exhausted. We don’t have the energy to explain why your suggestions won’t work, much less to argue you out of them. We love you, and so appreciate your caring, but some of that caring is placing a burden on us. Gastroparesis is an incurable, long-haul, (usually) non-fatal disease. We are not despondent, but one or both of us winds up in tears multiple times per week. This is really hard. When someone asks me, “How is Eva?” the best I can say is, “not as bad as she might be.” Which led someone yesterday to suggest that she is okay. I had to explain that she was definitely not okay, but it could be worse than it is (and it has been worse in the last week). We know you love us and want to help. If there were things we could ask of you, we would (Eva asked a friend to design a t-shirt for her this morning). But we are really stretched to our emotional limits just getting each other through each day. We don’t have the energy to take care of anyone else trying to take care of us.
