There has been so much going on, I have barely had a moment to catch my breath, let alone blog. So this post is chock-full of updates.
As the title suggests, there was an unexpectedly good week of doctor appointments. Which was surprising, because I expected the first one to be unreasonably expensive in terms of my pain to benefit ratio. That is because the first one was in person and 40 minutes each way.
The first appointment was with the doctor who was looking into whether my back pain was stomach-related or musculoskeletal, like my “gallbladder” pain had been. I had seen the results of the MRI and so had my pain doctor, and it looked like the results showed nothing beyond what one would expect in a middle-aged person. So I was fully expecting suffering through a drive for a doctor to tell me that the pain was my stomach and therefore, not his department. But instead, he made the whole trip completely worthwhile.
Apparently this doctor reads his own images. And what the radiologist described as a small cyst, was not actually very small. And it is sitting right on a nerve. And in a such a place that it is likely responsible for at least some of the pain I am experiencing. But then he made me appreciate him even more. He referred me to a neurosurgeon, not because I need surgery, but because of the placement of the cyst on a nerve, which makes addressing it outside of his wheelhouse. I truly appreciate doctors who are aware of their own limitations and refer accordingly. My appointment with the neurosurgeon is June 2nd.
The second good appointment was my long-awaited appointment with the motility specialist who is in-network. My insurance will no longer grant me the “access to care” exception to cover my Stanford doctors* as in-network because more two years after Mary first tried to get me an appointment with this doctor, she is now accepting new patients. Including me.
This motility specialist self identifies as a neurogastroenterologist, which is a perfect match for me. She had reviewed my medical history, including the testing that I haven’t been able to do because I can’t ingest 1,500ml of fluid and get it into my small intestines for a MRI enterography (MRE). I also updated her on the work I am doing with my naturopathic GI to address the bacterial overgrowth in my small intestines and trying to restart tube feeding at a very slow rate.
She said that she saw two different directions that I could go in, I could continue to pursue options to get the MRE or I could focus my efforts on getting back to tube feeding. Then she asked which direction I wanted to go in. Without hesitation, my answer was to be able to resume tube feeding. And with that, I became her patient.
The next step is for me to have an hour-long appointment with my new GI’s assistant, who is both a registered dietician and either an NP or a PA, neither David nor I can remember which. That appointment is May 26th.
That was all two weeks ago. This past week has been both a trial and a triumph.
The trial is all related to my efforts to try Motegrity for I think the 4th time since being diagnosed with gastroparesis. And each trial has resulted in me and David deciding that the pain it causes is not worth it because neither of us can see any benefit at the dose I can (barely) tolerate. And this time, it resulted in me losing ground in the amount I could flush into my J tube.
Motegrity is one of the only two motility meds that work on the small intestine. I am already on the highest dose of other one. As one of my GI’s in New York told us, the small intestine is boring. Nobody studies it because there are so few meds that work on it. So I am sure that I will be trying Motegrity again in the future. But for now, I am off it so I can resume beating up my small intestine with flushes and soon, watered down formula.
Yes, Triple Tube Girl is about to become Quadruple tube girl. This is getting to be too much, even for me.
Starting some day this week (I am hedging my bets, because I am needing to rebuild just flushing bile salts and water twice a day after the Motegrity experiment forced me down to just one flush a day) I am going to restart trickle tube feeds with watered down formula. But, of course, the formula needs to be separated from the bile salts. And this is where my life becomes a word problem.
If I am starting trickle feeds at 4 hours, and the formula needs to be separated from the bile salts, either one hour before the bile salts or 4 hours after. What time do I need to start my trickle feeds so that I can continue to put my xifaxan and bile salts through my J tube at 2pm? The timing of the xifaxan and bile salt flushes are largely determined by their separation from oral meds, so that timing is pretty fixed.
But wait, there’s more. I still need to run my TPN (IV nutrition) for 10 hours and my hydration for 2 hours. And there is only one me, and I cannot wear a second backpack on my front. I also need to factor in backpack capacity. Add in that I cannot pick up anything weighing more than 10lbs with my right arm because that is the arm with the PICC line in it. It is also my dominant arm. Practically speaking, I can run two pumps at a time, but not 3.
Last, but certainly not least, is that I now have to manage tubes going to two different locations on my body. When I run my hydration and TPN at the same time, at least both tubes go to my PICC line on my upper right arm. But when I run my enteral feed, that goes to my J tube which hangs down from the center of my body at about belly button level. As I discovered when I trialed running water through my enteral pump while running TPN, wrangling tubes going to two different places when putting on or removing a backpack is a special kind of fun. Plus, I have my free-hanging drain bag to manage on top of it all. I have never needed a prehensile tail/third arm more than I do now.
Truly, I have not been able to wrap my brain around what we are trying to pull off. Instead, I have been using my newly required brain space (thanks to the transcranial magnetic stimulation) to come up with other ways to get myself into trouble. Setting goals.
Setting goals is especially difficult when dealing with a chronic illness. I want to push myself forward, but I also need to recognize that there are days when my body will just not be up to doing anything. I also need to recognize that I need recovery time from doing almost anything. Whether that be playing a mindless game, reading (!!!!!!) or going on little adventures.
Nevertheless, I had set a goal of being able to go to a local fibershed event this past weekend, located about 30 minutes away. It was the perfect sized outing for me. There were only a few booths, scattered throughout gardens with dye and medicinal plants. And there were sheep and goats and alpacas and a ruminant with fantastic horns. It was too far away for me to be able to determine if it was a sheared sheep or a goat. But did I mention the horns on that thing?
I had very determinedly decided beforehand that I was not going to buy any fiber because I have enough waiting to be spun. I don’t need anymore. I am sure you can guess where this is going. In my defense, how cool is natural indigo dye? This vendor was selling dye plants along with her fiber. And I don’t recall seeing processed natural merino in colors other than white before.
At another booth, I just missed out on some gorgeous black and white fiber. The vendor gave me her card and told me to call her because she had plenty more at home. Turns out I had purchased fiber from her before and had kept her card because I wanted to be able to order from her again in the future. She is also located only about 30 minutes away from us. She invited us to come see her sheep when we pick up the fiber that I was interested in.
Clearly, our little adventure was a winner! But it wasn’t enough for us. On the way home, David stopped at a plant sale and picked up a couple of varieties of tomatoes and a couple of varieties of cucumbers. It was a little hard seeing starts for so many vegetables that I love to eat. But I got through it and by the time we got home, I was too exhausted to think about anything.
Today is largely a recovery and rebuilding day for me. I am writing this while David is off picking up pots for his new vegetable starts. I am cautiously optimistic that we are on an upward trajectory. But I am superstitious enough that I am following that thought with a “p’tui, p’tui, p’tui.”
*While it has become apparent that my GI at Stanford is not a great match for my needs (although I can appreciate that she is a leader in her field, my idiopathic gastroparesis make me an outlier among outliers), we will continue to pay out of pocket for my amazing pain doctor. And the jury is out on whether we keep my dietician. It all depends on how good my new GI’s dietician is.