Living the Game Show Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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