Little Miss Crankypants

It has been a pretty mediocre week, both emotionally and physically. I continue to have tiny bleeds and the meds they gave me to help heal my stomach make my stomach mucus thick which makes venting air really difficult. And given how much difficulty I have burping these days, venting air through my G tube is pretty important for my comfort level.

My stoma (the hole my tube goes through) continues to be painful. The area around it is sore from the inner bumper pressing against my stomach and abdominal walls. The stoma itself stings and is leaking a little blood. Once again, not enough to be problematic. But enough to make for a cranky Eva. I am very much looking forward February 13th.

In the continuing saga of how our medical system is disintegrating before our very eyes, I had to call the lab about some missing results this week. I am a huge fan of patient portals. Gone are the days when only the doctor could see test results. Since continuity of care is no longer a thing, it is up to me to maintain my medical history so I can track changes and report them as necessary.

My most recent bloodwork had two categories of tests. The ones that come in within 72 hours and the ones that can take a week or two. I noticed that some of the quicker bloodwork results were still pending after 72 hours. Among those were my thyroid results. I have had a bum thyroid since I was 19, so I know how long thyroid blood tests take. I checked the patient portal and there were still open orders for the tests I was still waiting for.

I called the lab and discovered that the reason that the orders were still open was that somehow one of their techs just forgot. They had my blood. They had the orders. They had done some of the tests, but inexplicably, skipped others. Since it was their mistake, they tracked down my blood (rather than me having to go back in for another draw) and ran the remainder of the tests.

For those keeping track, this means that I can’t even assume that my labwork will be completed without my oversight. There is simply no stage of my medical care that I am not personally responsible for making happen.

Speaking of which, It has now been 12 days (7 business days) since my GI changed my nutrition order. Despite calling every few days, my order continues to be “in process with my insurer.” Yesterday I got a slew of calls from my insurer that only stopped when I actually answered the call and went through the prompts (no human was ever involved on their side of the “conversation”) to tell me that my Rx had been approved. Despite their great need to tell me the news, they did fail to tell me what Rx had actually been approved. And they have not updated their portal with the information. Hopefully tomorrow I will be able to get an answer from my supplies company.

If I had not gotten a month of feeding bags from a fellow tubie and bought my formula out of pocket, I would be in dire straights by now. No one in the medical community has acknowledged how expensive and how logistically difficult it is to be a tubie. Once again, I would be lost without my fellow tubies lighting the path for me.

All of the above is why I am such a crankypants today. I can handle the uncertainty of how any given day is going to go. I can handle the unexpectedly significant time commitment it takes to be a tubie, even on days when I feel crappy. I can even handle the nausea, pain and discomfort that come with this disease. But when you add the having to micromanage every single aspect of my care, then it just gets to be too much.

The emotional exhaustion is almost overwhelming. It is the paradox of nutrition. When I was starving, I had no bandwidth for feelings, let alone trying to process them. Now that my nutrition is beginning to increase (I am now just over halfway through my transition to the higher calorie formula) and I have the bandwidth to do more than just get through the day, I am beginning to feel the isolation of this experience.

I am so incredibly fortunate and grateful that I have such loving and supportive friends, family and community. You all buoy me more than you can ever know. You make me feel loved, supported, valued and comforted. And you simply cannot know the emotional weight and exhaustion that comes with this life. It is like living in a TARDIS. I can only show you the outside, but it is so much bigger on the inside.

Fortunately, I am healthy enough that I can do almost all of my own caretaking when it comes to my physical needs. But David lives in the TARDIS with me. He helps sooth my pain, both physical and emotional, all while seeing his own world turned upside down. And as much as I would love to be able to afford him the same comfort he does me, I can only do so limitedly. In part because I only have so much energy and in part because I am the one who turned his life upside down.

The mirror of Little Miss Crankypants is Little Miss Grateful, so I am going to revel in the love and try to make today a little more bearable.