Status: Meh

It has been over a week since I was discharged from the hospital, and I still have no answers. Fact is, my GI doesn’t seem particularly interested in the questions. Or much of anything really. I spent Thursday and Friday trying to get some answers from my GI about minimal hydration levels and when to know that I needed to go to the ED for hydration. I say “I,” but what I really meant was my complex care coordinator calling my GI’s office over and over again, trying to get a call back or an answer.

In the interim, she also tried to get me a home hydration order. But I am apparently too medically complex for someone to just show up with a bag of salty water for me. There needs to be blood work. And I just didn’t have the energy to face an ED again. But Friday night, at about 6:30pm (remember, we had been trying since Thursday morning to get an answer) the on-call doctor came through for us. He said, that if I could get 500-1,000ml in me a day, I could stay home. Thus kicked off Operation Hydrate Eva. It was not always pleasant, and it turns out that Pedialyte popsicles don’t always taste magical when you are not overheated and overtired and stuck in an ED. But we did it!

And we are still exhausted. I am increasingly able to take back some responsibility for my care. But David is far from off the hook. The anxiety and uncertainty of not knowing what is going on is absolutely draining. I have been able to maintain an increase in my feeds. So I am now getting <800 calories a day as opposed to <500 calories a day. But we are stalled there. And I don’t have 2 months of this in me. I have already lost 10lbs in almost 2 weeks.

Last night was the first night in a week that I didn’t take any benadryl at bedtime. I slept until 7:30am when the pain woke me up. I took a Tylenol and eventually was able to doze off again. But I haven’t really been able to get comfortable today. I have been doing my best to distract myself my from my discomfort. Thus this blog post. Unfortunately, the flip side of these energy intense distractions is only being able to pet a cat or read the book titles on the bookcase opposite me for a while afterwards because as much as I appreciate the break from the misery, they do exhaust me.

Today, my complex care coordinator reached out to a palliative care provider. A nurse practitioner whose sole purpose is to help manage pain and nausea. He works in concert with the medical team, leaving treatment to them, but taking responsibility for comfort. Something treatment teams are notoriously poor at. My hope is that if we can manage my pain, I may be able to increase my feeds, even without addressing whatever the overarching issue is. This particular palliative care provider doesn’t normally accept patients with gastroparesis unless it is secondary to something else. But he agreed to at least have a conversation with me.

In the positive news column, my gastroparesis has done something that David had failed to do on his own despite 24 years of trying. It turned me into a sportsball baseball fan. It turns out that baseball is absolutely what living with a chronic illness calls for. At least in my case. And despite being a native New Yorker and living in Queens, I am a Red Sox fan by marriage and therefore a red Sox fan*. And as long as that means that I loathe the Yankees with a deep and abiding ferver, I think that makes it ok with my family of origin.

*I may officially be a Red Sox Fan, but I reserve the right to wear my Portland Pickles and my Exploding Whale jersey to sportsball baseball games.