Life with Mikey, 5

Short story:

Had a better week than in the prior report. “Better” being highlighted by playing pool with my team. 🙂

Much easier to eat. But the second trial of MMF led to the same conclusion as the first: my body doesn’t tolerate the drug.

Long story:

When we checked in last, I was getting ready to try MMF a second time. That was a Friday. By Monday morning, it was obvious that my body was saying “no.” Even MiraLax was insufficient. (Although I did not hit the same level pain, the abdominal distention was just as pronounced.)

We saw Dr O on Tuesday 31 January. It was a “teaching day” – we had two brand new students.

The attending resident, Suzanne, is Iranian and told us that PV is far more common there. The prevalence in Iran is 1-in-100,000; still rare, but more common than here. She also told me to “eat up” — she specifically mentioned ice cream!

Dr O recommended we open treatment Door Number 2, which we expected. Once my GI tract settled down, I was to start MPA, which is an analog to MMF. But it hasn’t settled down.

As we were wrapping up last Tuesday, Kathy asked Dr O how many PV patients he treats. “A bunch,” he said. He talked a bit about the types of blistering skin disorders — and that another doctor at UW also treats these diseases — and then concluded with “oh, probably three or four a year.” (!) We have different definitions of “bunches.”


THANKS MissQ’s: I made it out of the house to play with you. I felt penguin-like waddling around the table, trying to keep some semblance of balance while attempting to play the game. Yes, I am flusterkated by my slipped ability. At the same time, I was able to *focus* on the game in a way that took my mind away from everything else. For that ~90 minutes, I was playing. I do not have the words to express its positive impact. It is my honor to call you team mates.


The primary weirdness of the past two weeks is fluid intake. Without it, constipation. With it, sleep. Let me explain.

No matter how much or how little water I drink, shortly afterwards I go to sleep in something like a “food coma.” I sleep deep and relatively long. And wake up groggy, not rested, with a lack of energy that feels like I’ve been hiking for 8 hours without food or water. Kathy has searched the interwebs and can find nothing that explains this physiological response. It’s a struggle.

For example, when I drink a shake, my primary source of protein, within an hour I need to sleep for at least an hour. This happens with plain water, too, so it doesn’t seem to be a blood sugar spike.

It’s a significant mental exercise to drag myself out of bed when I awake. Then there’s the getting over the drained feeling which takes the rest of the day assuming (1) the shake was breakfast; (2) I eat what feels like lots; and (3) I drink little to no more aqua.


Most of the blisters on my body have healed. And my mouth is better, too.

Which brings me to FOOD!

The best news of the past two weeks: I CAN CHEW. I’m not ready for a grilled T-bone steak, but I can eat more than yogurt, cottage cheese, scrambled or fried eggs, and grits (now with quinoa for the protein boost).

Kathy’s having fun (yes, she says its fun) experimenting with recipes. We got a Plated delivery (by accident) last week and wound up with a delish chicken dish. But the hands-down winner for the week was a four-ingredient slow cooker pork dish (the pork is one of the ingredients) that she made for Super Bowl Sunday. (That was a downer, by the way.) This Mexican-inspired pork sirloin was definitely a winner, unlike the Falcons!

Alton Brown has a new cookbook; it was a Christmas present for Kathy. One of the recipes is harissa scrambled eggs. They are yummy, and Trader Joe’s is the place to buy harissa paste. Another recipe is “chia” pudding.

Chia pudding?

Yeah, that’s what I thought, too. But Kathy has made two different “overnight” refrigerated chia puddings. One is chocolate-flavored with an almond milk base. The other uses almond and coconut milk plus oats and chia and flax and dried fruit (that’s Alton’s recipe). They are both sweetened with maple syrup, but of course Kathy is experimenting with an agave-maple syrup mix. Both are yummy. 😉

Yes, I’ve indulged in ice cream {a pint a sitting, twice}. I consciously work to limit that seduction. Doctor’s orders, right? LOL. Kathy’s experimenting with GF cupcakes. And Monday we had our second Red Mill GF pancake mix breakfast. Yum.

Next week, our appointment with Dr O is Wednesday, because Kathy’s tied up all day with a special election on Tuesday.

But the weekend? Saturday is the ballet!

Thanks for listening

Kathy, Katie & Michael


Treatment door number 3

There are a variety of treatment options to consider.

infusion of steroids (“pulse therapy”)
infusion of rituximab
intravenous immunoglobulin (IVIg) therapy

Kathy’s spreadsheet of journal articles/research:

For more reading:

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