what passes for hope

I figured out at least some of why yesterday’s appointment left me feeling kind of shitty, emotionally speaking.
Dr. S_____ is excellent. Smart, and he seemed kind and thoughtful. In some ways, I felt lucky to have been able to see him. But I also felt very down yesterday after the appointment. I had horrible dreams last night, and can’t shake this bad bad mood today. So I thought about it. I think this is part of why it left me feeling like this.
With health stuff like mine, at some point, you get to a stage where you are no longer looking for someone to diagnose ALL of your problems and offer a doable affordable realistic treatment that might actually work….. Let’s call this the “Ah-ah-ah!” diagnosis (as in choir of angels singing sound effect, clouds parting, ray of heavenly light streaming down and illuminating not just all the causes but a path to a cure or a reasonable treatment). This is the diagnostic journey that maybe isn’t quite a miracle but – you know – way better than you ever dared hope for diagnosis and treatment.
I do not expect an “ah-ah-ah!” diagnosis anymore.
Let me back up. I saw this new doctor yesterday because I’ve been having problems breathing and stuff. Here’s what I wrote down in my notes for the new doctor appointment yesterday as why I was there:
  • Episodes of severe shortness of breath / feeling like I need to take a deeper breath than I can take. Comes with chest pressure. If it’s bad or goes on a while, there’s chest pain. I feel like I run out of air talking & eating, can’t do both at the same time. Reduced force of cough (in general), laugh changed. Eating & activity trigger it and worsen it if it’s already going.
  • These acute severe episodes started in January. Frequent and severe for a few months, then seemed to let up when I reduced how much I ate and was careful about resting after any activity (showering, making food). I’ve lost about 15 lbs since then.
  • In mid-May, these symptoms got worse again – had an episode where I felt very sedated, stuporous, and weak at peak of chest symptoms. Didn’t get my BP at peak (did later in ER. it was my typical baseline, slightly elevated from stress & iatrogenic pain), HR was low (50s/60s) throughout onset and peak of symptoms.
I saw this new doctor yesterday for this after spending the last 5 months seeing all the likely old doctors for it. Here’s a paraphrasing of how all the appointments with the likely old doctors went:
Gastrointestinal (GI) doctor:
“Nope. I don’t think it’s GI. Well, maybe. But not a hiatal hernia, upper GI was good. I wonder if your stomach is emptying slower again? Should we do another gastric emptying test?”
Me: “Let’s see if it’s something else first.”
GI doctor: “Ok.”
Neuromuscular neurologist:
“Nope. I don’t think it’s muscular. Well, maybe…. You should see a pulmonologist for this even if it is muscular. Also, you’ve lost a lot of weight. See a pulmonologist and then come back and see me in a year.”
Primary care:
“your chest x-ray, chest ct, and bloodwork look ok. I’d like you to go see local cardiologist, get a stress echo. Didn’t I order one on you before?”
Me: “yeah, that local cardiologist’s office took a month to process the order, then ordered the wrong thing.”
Primary: “I still want you to see them for this, let’s get a stress echo.”
me: “Ok.”
Two weeks later, me to primary care: “hey, I still haven’t gotten in to see them, they haven’t called me and when I call them their phones are out of order. local cardiologist sucks, can I go see Big Boston Hospital cardiologist instead, since it’s actually cheaper for me to be seen at Big Boston Hospital, and since I’m going to wait forever for either cardiologist anyhow?”
Primary: “I don’t like referring to Big Boston Hospital specialists anymore.”
Me: “seriously? Local cardiologist really really sucks and this Big Boston Hospital says they can do the test you think local cardiologist should do they just need you to send in a request.”
Primary: “No, you need to go to local cardiologist.”
Local Cardiologist
(who told me in the past that I was abruptly feeling lots of PVCs because I probably just always had lots of PVCs and was just a sensitive person who was hyperaware of her heart…. (great logic)):
“your heart is perfect!”
Me: “so why do you think I am having these chest symptoms?”
Local cardiologist: “It’s probably just dysautonomia. Your blood pressure’s probably low. It’s probably syncope.”
Me: “I don’t feel my other syncope symptoms when it happens, and I did check my BP a few times when I was very symptomatic, it’s no lower than my baseline, certainly not my nadir.”
Cardiologist, ignoring everything I just said: “Yeah, it’s probably just dysautonomia. I mean I can do a stress echo if you really really want one… “
Me: “No.”
And so yesterday I saw the new doctor because no one so far has been able to help and I’m losing weight and function again. And because the new doctor is a pulmonologist, and he sees a lot of patients with dysautonomia. I figured at least he would not be like, oh say Local Cardiologist about people with autonomic stuff or EDS stuff. But it turns out that this new doctor I saw yesterday is an “Ah-ah-ah” doctor. While I had some warning signs about that from other people in my online support groups, I guess I believed I could somehow…. maybe avoid that? At least avoid jumping right into it, right out of the gate since I was not some newly diagnosed or undiagnosed patient who still has hope. Or I thought that that if we did eventually go there, we could ease into it like how you get into water when it’s a bit too cold.
Prior to yesterday, the last “ah-ah-ah” doctor I saw was an autonomic neurologist. I first saw him in 2016 I think, after waiting months and months to get in. He asked me early on in our journey “If you could fix one thing, what would you fix?”
I said “The gastroparesis,” without hesitation. “It makes everything worse. It makes me not able to take meds or even just get nutrition and fluids I need to manage the other stuff.” (spoiler: there is no fixing the gastroparesis.)
Autonomic Neurologist: “Maybe this medication” (for my cardiovascular autonomic symptoms) “will help a little with the gastroparesis too.”
I had tried that medication several times, but to show willing, I tried it again. And as before, it did not help. It made me vomit. And it hurt. So we tried another medication. It did not help, and it made me want to kill myself because I was so irritable that I would snap at everyone around me and I already have PTSD from long term abuse by my caregivers as a child, with gaslighting, so getting mad at my loved ones made me feel all PTSD-ful, and certain that they were going to get fed up and leave my crabby ass. “That medication shouldn’t do that” the neurologist told me. The peer reviewed research I read told me otherwise. We stopped it since it wasn’t having a therapeutic effect anyhow.
So then we tried another med. It did not help and it also hurt me. I had asked, when he suggested the medication, “but doesn’t this drug you are now suggesting actually slow gastrointestinal transit?” He told me that it shouldn’t “too much”. But it did. It did raise my systolic by about 5 points (or mm-whatevers). But I had a syncope episode with no prodrome while I was on it and that’s not helpful at all. So we stopped it.
We tried another med. It did not help and it also hurt me. Gastrointestinal symptoms, dropped my blood pressure.
And then we then reached the end of our journey, but no one acknowledged that. That last “ah-ah-ah” doctor and I have no game plan now. Other doctors ask me if I am “followed by” the autonomic neurologist and I shrug and say something like “yeah, kinda?” He told me to follow up by phone but not why or how. Do I call him every few months to say “hey still sick, just thought you should know.” Should I tell the other doctors about this? I told one and he was clearly at a loss for what to say. It was awkward.
Before the gastroparesis (GP), in 2013, I had two full time jobs after graduate school. At those jobs, I had struggled to work even with accommodations. I missed work, a lot. I worked badly, a lot. I got hurt. It sucked. So it’s not like things were great pre-gastroparesis, but I’d gladly go back to “just” the health problems I had before the GP began. It’s been 5 years since the GP, and it’s been so many more since I was “ok”. I know that there isn’t any going back to that, not an “ah-ah-ah” way to get there, and not even a hard way to get even just half way back to that level of function and health.  The initial “ah-ah-ah” promise of possible research trials or pushing insurance to pay for an off-label treatment that maybe would help evaporated with that last neurologist’s “call me!
And in the meantime, the world ended (Trump).
So now I just chase the symptoms that make things unliveably worse. I seek outside evaluation to make sure it’s not life threatening, to try not to lose function, ability, quality of life.
my hands grabbing for a "rope" painted on a brick wall.
Photo of my hands grabbing to pull myself up on a “rope”. The “rope” is part of a mural on a wall in Salem, MA.
All medical journeys are exhausting. But these “ah-ah-ah” medical journeys feel extra hard. I think this is because they require a more painful investment than just the time and energy it takes to see research the doctor, make the appointment, get there, wait, be tested, go home,  recover, hear back, follow up… etc. The “ah-ah-ah” journeys also require an investment of more than a small amount of hope.
Hope is in very short supply here. For me these days, hope is like a game I used to play with myself in the winter when it was painfully cold and dark. I’d imagine that it was actually the middle of the hottest summer day and I was stuck outside bored and broke – and then I’d come back to now and be happy and even relieved for a second at how nice and cool it was. And then I’d hang onto that and savor it. It didn’t warm me physically, it literally changed nothing, but it made it easier to take.
If you have a nice life or a relatively nice life or if you just still expect that life will be nice, you probably think that this is all fucking depressing. I think it’s survival. I assume at some point winter will be over and I won’t have to play these games to get through, but for now these are what I’ve got and this is what passes for “hope”. This “hope” isn’t very sturdy and it takes some work to generate, so I can’t just go expending it any old place.
Seeing a new doctor with the goal of even just identifying whatever the hell this new thing is – even that much means expending quite a bit of effort and energy (not to mention money). I was willing to do that. I was going to do that. The trade-off seemed sufficient. The effort and energy of looking into this new symptom set was worth the possible payoff of getting back to where I was before January. I accepted the work for that. But, I did not expect another “ah-ah-ah!” diagnostic journey. I don’t know if my “hope” is robust enough to go through another dead-end miracle.

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