Thread by @TWalk

So who wants to hear about my week? Spoiler: it involves struggling to breathe, getting my insides fluoroscoped, and completely changing everything I eat and drink, including giving up all alcohol and caffeine, maybe forever.

You game?

Assuming your answer is yes, here goes:

Last Saturday night I started experiencing shortness of breath — never happened to me before — and I had no idea why.

/2

I thought it was a stress reaction, like some low-grade version of a panic attack. Not unreasonable given that (a) members of my family have had them over the years, and (b) I've been under a terrible amount of personal stress for a long while now.

/3

Anyway, it was unsettling enough that I didn't know whether I was coming or going Saturday night. Couldn't get comfortable sitting, lying, or standing. I think I dozed for maybe 45 minutes the whole night.

/4

Finally it seemed to get a little better when the sun came up on Sunday, but that rebound was transient.

/5

I spent the afternoon with a friend, and finally I felt relaxed, just sitting on a patio and having a beer. Breathing was okay . . .

/6

. . . until it wasn't. After drinking a couple of IPAs and noshing on a plate of (non-spicy) chicken nachos, I got short of breath again. Walking around seemed to help a bit, but overall: deeply unsettling.

/7

My working thesis of "anxiety reaction" had prevailed until then b/c I was in the last throes of a falling-out with a close friend that I still don't fully understand.

(That kind of thing has happened for me only very rarely; I always find it hugely upsetting.)

/8

But on Sunday afternoon, sitting on that patio with my drinking buddy, something clicked. My father and my 20-y.o. have both had problems with acid reflux in the past, sometimes fostering breathing problems.

/9

My friend was very sympathetic and had good advice for me, including that I lay hands on some Prilosec. I stopped in at the drugstore for that and Tums on my way home.

/10

From that point to this, I've been refining my understanding of how what I eat affects acid reflux and thus my breathing. Learning more about this every hour of the day through a series of tiny experiments. (More on that in a minute.)

/11

On Monday I went to make a doctor's appointment, but first I had to call up my insurance company. They sent me a letter a couple of months ago to tell me my PCP had left the network; they were going to assign me a new one . . . but hadn't yet.

/12

So there was all that to take care of, and then I was able to make an appointment for first thing Tuesday morning to see a doctor in the same family practice my kids use.

/13

Sleeping has been getting a bit better night by night. I have to elevate my head and shoulders and sleep on my back (instead of my side like usual for me), but when I wake up in the night I can breathe much more easily.

/14

Anyway, the Tuesday morning doctor's visit: I explained my symptoms & presented my thesis of acid reflux to her, & she thought it was very reasonable, esp. given the family history.

/15

She checked me out for any of the other—potentially worse—things that might be causing shortness of breath, e.g. heart attack, blockage/pneumonia, etc. Took a chest X-ray, which came back normal.

/16

I should mention that on Sunday and Monday I had done searches to try to nail down the symptoms. Found a page on a medical site that described my symptoms to a T.

/17

That page was esp. helpful because it explained that many people with my symptoms *don't* experience the persistent/recurrent heartburn that is the most obvious sign of reflux. The subtlety of it can make diagnosis difficult.

/18

My dad had that kind of heartburn, but I've never experienced that. Plus the shortness of breath hit me from out of the blue.

/19

So my doc prescribed stronger anti-reflux meds (I had taken Prilosec OTC first thing in the morning for two days by then), and referred me to an imaging clinic for upper GI fluoroscopy. I made the appointment for the imaging as soon as I left her office.

/20

The rest of Tuesday I limped through my work, the school carpool, and so on, dealing with highs and lows in my breathing as best I could.

/21

I was never an asthma sufferer, so I had no previous experience of this. But a good friend of mine has dealt with serious asthma her whole life, so I felt like I had some sympathetic insight into it.

Let me tell you: I had no idea.

/22

When you can't breathe freely, everything else screeches to a halt. You can't think well. Your body doesn't operate well, even if you are getting "enough" oxygen. Your emotions go haywire.

/23

After the doctor visit Tuesday morning, I looked up foods to eat and avoid when you have bad acid reflux. I found a great article on it and started making a big list.

/24

No citrus, pineapple, etc.
No fatty foods.
Minimal sugar.
No mint, onion, or garlic.
No nightshades—tomato etc.
No alcohol.
No caffeine.

/25

Now, I want y'all to think about how much I love coffee, and about how often I've played bartender here on Twitter (cc: @venetianblonde), or indeed met Twitter pals in person for drinks (e.g. @PippinParker last time I was in New York).

That may be over for me, forever.

/26

Other things:

—Stay upright for 2+ hours after eating.

—Stop eating 3 or 4 hours before bedtime. (My dad ended up doubling this when his condition was at its worst.)

—Sleep with your head elevated.

—Eat lightly.

—Don't compress your midsection, e.g. by doing crunches.

/27

Oh, and no chocolate. And no carbonation, which I don't care about for sodas, given that I haven't regularly drunk them for 25 years, but which puts my beloved craft beer doubly out of reach.

/28

Y'all may know, from looking at my cloud photos here or the pics I post on Instagram, that I do live up to my surname by walking a lot. Well, the past week it's been way, way more of that, because brisk walking outside helps me breathe better.

/29

Upside: when I've taken walk breaks at the office, you've gotten better photos of the bluebonnets, ivy, etc. on the IBM campus.

/30

I also find that it helps to be with my near-&-dears. So I've spent time with friends—including an impromptu lunch with the highly sympathetic @AnnettePriest on Tuesday—and roped each of my kids into taking evening walks around the neighborhood with me.

/31

Anyway, for my imaging on Wednesday morning I was NPO after midnight, which was as usual a bit of a drag—but which also meant there wouldn't be any food in me to stir up acid. I slept pretty well.

/32

The imaging visit was great. The tech was razor-sharp and knew exactly what she was doing. So I slurped my barium smoothie on command, and she got lots of photos of my GI.

/33

After the imaging session, which lasted well less than half an hour, I went a couple of doors down to La Madeleine. I got oatmeal for there and an omelette (just eggs, grilled chicken, spinach, and mushrooms) to go.

/34

The food hit the spot so well.

I wrote in my notebook—strong thoughts about where I want to be in my future.

And I called my dad, who shared his own experiences with me.

It's like the clouds parted.

/35

More good news later in the day: the imaging showed that I don't have a hiatal hernia, ergo don't need the surgery that my dad did.

/36

(Confession: as little as I like the thought of yet another surgery on my record, I *do* know how to handle that, and there was part of me that thought it might be the simplest, most decisive approach.)

/37

Felt much better that day at work, though it was up-and-down a bit on Thursday, and again yesterday after I ate the lightest lunch of avocado toast. (Should have stopped at one piece instead of having two.)

/38

Anyway, each of the past two evenings I've hit a grocery store with an offspring in tow, and they've helped me pick out foods with no trigger ingredients.

/39

I'm also dealing with my stress much better. For one thing, I wrote to a couple of clients who are waiting on things from me to let them know what's happening. Of course they were sympathetic, & I'll finish up what I owe them in good order.

/40

As to the friend of the falling-out, I think I've truly turned the corner to "vaya con Dios" mode. I don't have to understand everything about it; I can choose to simply let it go and wish them well. Just doing *that* has had an impact.

/41

And the new foods are working. Yesterday I took @iw41k out for dinner. I chose my meal very carefully, and initially ate about a fifth of it. I was fine.

/42

Eating tiny meals seems to help a lot. This morning I had two tiny bowls of Ezekiel cereal (which I've always liked anyway) with almond milk, about 90 minutes apart. No problem.

/43

And this morning I've started drinking ginger tea, which will make a nice replacement for my morning coffee.

/44

In the longer run, assuming I have to maintain this type of diet, I'll use this as a jumping-off point to become a better cook, which I've long wanted to do, and to nail down my nutrition from a physical-training perspective—like bodybuilders do.

/45

And I don't have it that bad. The head of my kids' school has such severe celiac disease that she can't even be around ordinary bread. Yet she's living a healthy, energetic life and having a great impact on many lives.

/46

There are so many examples of people dealing with much worse problems than mine, even before we get to things like ALS. I've got it good.

/47

And I'm not going to let any of this stop me from writing my books, earning a good living, loving the people who are special to me, traveling the world, or making my own impact.

Stay hungry—no matter what you're able to eat.

48/48

Health update, for those who are interested: last week I had a bit of a relapse, as explained here:

External Tweet loading...
If nothing shows, it may have been deleted
by @TWalk view original on Twitter

49/

Every single day, I'm learning more about how to manage this condition. My goal for now is to build up a long string of days and weeks with no breathless episodes, even if that means minimal experimentation with what I eat.

50/

This is for my physical health, sure, but more than that for my mental health. Breathlessness operates in a vicious cycle with anxiety: being anxious makes you short of breath, but also *vice versa*.

51/

And the last thing I need right now is more anxiety in my life. Ergo, super-boring eating with no experimentation is fine for a while as I uproot other stresses from my life.

52/