A Thing I Learned About My Asthma Treatment and the Rest of My Body

That was a long title! Thank you for staying with me.

This past month has been an education, for sure.

When James got laid off, he got a stipend to pay for COBRA (a continuation of his work-provided healthcare) for three months. That ended on August 31.

We're all pretty healthy, but D and I are on a few prescriptions, including two pretty expensive meds (one each). Mine is my maintenance inhaler.

For many years, I just didn't have access to a maintenance inhaler because of the cost. They're several hundred dollars every month! I would get the albuterol rescue inhalers ($30 per month, except when I and friends/family bought them in Mexico) and had to use them at least once a day, and usually closer to 4 times per day. It sucked, but it was relief and I appreciated it.

Indeed was the first company that offered family insurance at a low enough rate that we felt like we could swing it. Soon after that, I started on a maintenance inhaler and it was an absolute game changer. I kept my albuterol, but only needed it on particularly bad allergy days. 

I was on Flovent for about 3.5 years, then my insurance stopped covering it. I was upset but they offered an alternative in Pulmicort. I switched, but after a few months, I could see that it wasn't as effective for me. I was having to use a rescue inhaler a couple of times per week, much more frequently than I was used to.

Just as I was about to contact our insurance about other alternatives, they reached out to me to say that Pulmicort was being discontinued (and apparently Flovent was also discontinued at the beginning of 2024). 

This time, I was switched to Wixela, which is a generic version of the meds combo in Advair.

This one seemed weird because instead of being an atomized liquid, it is very powdery. I didn't always remember to rinse out my mouth after taking the other inhalers, but I definitely remembered with this one. 

I took it for probably a year before we lost our insurance. The sticker price for the inhaler is over $300 a month. Even with a discount card, it was more than $100. Just not feasible.

Fortunately for me, I had backups of both the Pulmicort and the Flovent because when they refilled, I typically still had some left. I decided to start with the Flovent, which was older, mostly because it actually worked for me. My hope was that by the time I ran out of Flovent, we would have insurance again.

A week or so after I ran out of the Wixela and returned to the Flovent, my daily intense bouts with acid reflux returned. I was on Prilosec for about five years because otherwise I was awakened by painful burning in my throat one or two nights per week. You're only supposed to take Prilosec for 2 weeks because it can cause bone loss and kidney issues, but your girl has to sleep.

However, as I realized that I had bone loss and kidney stress from the hypercalcemia that comes with hyperparathyroidism, I stopped taking Prilosec in the first quarter of this year. I was still having some acid reflux, but never the tear-inducing wake-you-up pain of before, and I was able to treat it with normal antacids (which did not put a dent in my GERD before). Side note: my symptoms improved noticeably after my parathyroid removal.

As my acid reflux became more prevalent and intrusive, I googled "Flovent and acid reflux." It's not common, but some asthma medicines can relax the lower esophageal sphincter, thus allowing acid to travel up the esophagus. 

Desperate to keep my asthma at bay while still being able to do things like sit down and go to sleep without having my chest on fire, I searched and was able to find a way to get the Wixela for $50 a month at a pharmacy more out of the way than the one we typically use.

Would I have been willing to pay $50 at the beginning of this experience? Meh. Probably not. If the Flovent had worked as well as it used to AND I hadn't had acid reflux, it would have been fine. But from here on out, I'm going to pay my 50 bucks and thank my lucky stars that our insurance jerked me around so much with different options so that I found this one!

I took the Wixela yesterday and was able to lie down last night and sleep all night with zero burning. So, yay! Some people try to avoid medicines at all costs, but, man, the quality of life that some of them offer is just an absolute miracle. Big Pharma? Boo!! But I can't quit them because they're truly just so so good at what they do.

The End of My Crocs Era?

For probably the better part of a decade, all of my shoes were Crocs. I LOVED Crocs. I was a Crocs evangelist! People think they're ugly? Who cares?! Wear what you like! You can't argue with the comfort!

But something happened...

A weird thing about my Crocs obsession was that I don't actually like their clogs. I don't find clogs comfortable, and because I have very high arches, the tops of my feet are up higher than most feet, I suppose. Clogs give me blisters. 

The good thing, though, is that Crocs used to make all kinds of styles of shoes beyond just their clogs. 

During the past few years, it seems like they've tightened up their lines. They're all made of that rubbery Crocs material, and they're mostly variations of clogs. They have platform shoes, sandals, and even rain boots. But they're all the same hard material and the past couple of pairs I've ordered, I had to send back because they were too big or too uncomfortable.

I think I'm done ordering Crocs... for me. Mal still loves them. Regardless, I'm sad that this go-to for me is no longer an option. 

And so, to honor the Crocs of the past, let's stroll through some of the Crocs I've worn (and worn out) in the past ten years...

I almost never need rain boots but I do still have these and wear them in rain and snow!

Cute Mary Janes I could wear AND dip my feet into a pond/fountain in downtown Dallas.

I LOVED these; they have the Croc material sole but stretchy fabric uppers.

Adorable boat shoes with a fake leather thread.

I still wear these shoes, sans lining, when I'm working outside.

Little yellow and blue print on white flats.

Blue floral print on a black background.

Okay, these were Mal's. But they were the same-ish as my shoes with Croc bottoms and cloth uppers

Another pair of Mary Janes. They were translucent! And so flexible.

Heels that look strappy and complicated but aren't. I still have these and wear them extremely rarely, but they're surprisingly comfortable.

 Fare thee well, Crocs! I'll miss all of the fun we had.

Weird Morning

 

We toured KXAN today with Mal's school and it was a neat time!

Before that, though... I had a really strange morning.

First, when I woke up, it was from a dream in which I saw a homeschool friend I'd had in Sherman. In the context of my dream, I'd had a baby soon after Mal and had given it to her, as she really wanted another kid but since she was a bit older than I was, wasn't able to get pregnant again. We hadn't seen each other in years, and I wanted to ask about the kid, but couldn't remember what my friend had named her.

"How's Little Girl?" I asked.

"That doesn't really describe her anymore!" my friend answered.

Then I remembered that we'd just given her the baby without any formalities. I thought that it was probably time to discuss her formally adopting the child (who, at this point, would be 9ish?).

Weird dream.

Then I woke up a little too early to go on a walk, but since we had a pretty early leave time (for our family), I decided to get out while it was still dark (and 49 degrees! yay!). As I was walking down a nearby street, I greeted a man who was walking up the road the opposite direction from me. He passed, but I could tell that he was talking to me. I was listening to a podcast but had the earphones on transparent mode. I still couldn't understand him. I finally took out one earbud and asked him to repeat himself.

"Are you the mail lady?"

"No."

He nodded. "Oh, yeah! Red!"

I said, "Not anymore."

He walked over to me, stuck out his arm like he was an escort, and said gregariously, "Let's walk!"

It kind of alarming, but I didn't feel scared, so I just took his arm and walked with him.

He asked what I was doing, and I told him I was getting some exercise before my kid woke up. I asked him where he was heading, and he said he was just walking around. 

During this exchange, he looked at me again. 

"Sharon?" he asked.

"No."

He dropped my arm and said, "Oh! I'm sorry! I can't see details." 

I told him it was fine and he continued to walk the direction I was walking, but he gradually walked to the other side of the road. When I got to my turn (which happened to go by the police department, but I'd already planned my route before I saw him), I wished him a good day and he went on his way.

Weird.

Finally, when I got home from my walk, I checked the mailbox and found a piece of kids' handwriting paper folded over with red marker writing on it reading "jet lost cat". Not sure what to do with that.  

So... how's your day been?

The Second Round

Last week, I'd started on a blog post about my feelings regarding the outcome of the most recent US elections. I got most of the way through and ran out of steam, plus I wrote a bunch about it on our family Slack and that blew up. Lots of hurt feelings, lots of not really seeing each other, lots of stuff that we might never fully work through but we're family and we love each other anyway. But it's still an open wound.

Wednesday morning, James's first words to me were, "What do we do now?" If I need to explain to you why we're dumbfounded and upset, then you don't really know my family and there's too much to catch you up on here. Regardless, I had a clear-ish vision: "We take care of our kids. We do what's best for our family." As we spoke, I realized that James was in a tailspin and I was perhaps not as gracious as I could have been. I was in active survival mode and James needed a few days to process and gain his bearings. I know that my inability to suffer prolonged bouts of vulnerability in others is one of my character flaws. I've been thinking on that as I've looked at rentals in Minneapolis and priced snow pants, crampons for all, and winter tires.

The past few weeks, I've been listening to various episodes of a podcast my sister mentioned to me: The Bodies Behind the Bus. The most recent episode I listened to resonated do deeply with me. The guest was Eric Isaac. He was talking about creating his own definition of spiritual abuse. I couldn't find a transcript, so ended up transcribing his thoughts on my own. And I ruminated.

This morning, it all came together in my brain, why I feel like I know where we are, why I feel so personally worn down and discouraged, and why my instinct was to ramp up and do this thing, whereas James needed more time to grieve and come to grips with reality.

First, I'm going to share Eric Isaac's definition of spiritual abuse: "Spiritual abuse is its own umbrella category of abuse. Any form of abuse — sexual, emotional, psychological, vocational, or other — can fall under the category of spiritual abuse if God or the sacred is presented as complicit or used to justify abuse by power-holders through attempting to coerce or manipulate others for the purposes of control. The effects of this unique form of abuse can create unique theological or ontological trauma that can leave a lasting abusive construction of the sacred or God long after the individuals have removed themselves from the abusive environment. Spiritual abuse can also create and inform entire faith communities and institutions that are built on abusive manipulations of the sacred, perpetuating abusive conceptions of the sacred, alongside behavior by institutionalizing the conceptions of the sacred."

By that definition, I've been the victim of spiritual abuse multiple times in my life.

First, I was married to someone for 13 years who would make a decision (for example: that I needed not to talk to my sister as often as I was) and say, "If that's the wrong decision, then someday I will answer to God for it. But I'm responsible for this family, and that is my decision as to what's best for us."

Second, when I set about to leave that man, the church where I'd served for more than 6 years called me into meetings almost every day for two weeks trying to talk me out of divorcing him because "What if Jesus is going to save your marriage tomorrow and you gave up one day early?" They didn't what to appear to support the idea of divorce, so they micromanaged my behavior (or tried to; I'm bad at obeying when I disagree) for over a year before I folded and moved away. This was after they invited me to leave several times.

Third, when James and I got engaged, my church leadership tried to talk us both out of it. Since James isn't a believer, they didn't want me yoking myself to him. In the end, the preacher told me, "If you're not willing to submit to this part of our leadership, I'm not sure what we have for you here." This hurt, but when I found out that he'd groomed another young member of that church and carried on an inappropriate extramarital relationship with them (which started as sexual assault and continued through spiritual abuse over time) for many years, I was just mad.

Mad at the control for their own purposes. Mad at withholding the love of Christ because their priority was maintaining the glowing reputation of the church. Mad that the parable of the 99 sheep doesn't seem to apply to these people and their organizations: When you have a lost sheep, that's where you devote resources and love... you aren't supposed to just say, "Wow, you're a mess. Sacrificing the one for the 99 is just good math."

I have decades of experience in the arena of, "You'll do what I tell you to do or you'll suffer the consequences because God and stuff."

Years ago, when I was cleaning out my closet to prepare for moving from our family home of 7 years into the RV that D and I share for a couple of pretty awesome years, I remember a feeling washed over me. It said, "No help is coming."

For weeks, I'd been telling my story to anyone who would listen, in hopes that they'd understand my predicament, have some empathy, and walk through the process as my corroborating testimony. (To be clear, I did have friends who rose to this occasion, but no one on the church staff; no one who had any ability to make my presence in that body anything other than a thorn in the side of leadership.)

That message that I was on my own was kind of freeing. It allowed me to stop looking for a soft heart where none existed and instead redouble my efforts to move ahead, knowing what I needed to do.

The trauma of that lives large in my life to this day. I think that's why the quote about spiritual abuse felt so affirming and cathartic. It helped me see that when I'm triggered with a certain flavor of despair, I click immediately back into that mindset.

Last week, I tried to explain my hurt regarding the election to people who couldn't hear it. I guess I haven't learned that lesson yet. I'll just commiserate with those close to me who feel the same way I do and keep doing what I always do: taking care of my family and putting one foot in front of the other. Oh, and resisting. Because, as you now know, I do not obey well when I don't trust my leaders.

Morning Person in a House of Night Owls

Mal has been sleeping a little later than usual, which is great because we're about to head out of Daylight Saving Time.

Since his school starts at 10 AM, I actually had to wake him up at 9:00. He goes to be at 11 PM so probably got at least 9.5 hours of sleep. I think he's about to have a growth spurt because he's been sleeping more than usual, and has been very hungry.

By the time I woke Mal up, I'd walked 2.5 miles, cleaned up and gotten dressed, made myself breakfast, and even went to pick up a grocery order.

I am a morning person.

No one else in my family is (as you can tell, with Mal consistently going to sleep around 11). 

D used to be. Until we moved into the RV, D's bedtime was 7 PM, with a lights-out time of 8 PM. Was this a challenge during the summer? You bet. But D was mostly fine with it, and would wake up bright and early. D never got out of bed before 7 AM, but just like at night, could read or entertain themself until they could wake me up at 7.

Once D went through adolescence, though, they became nocturnal. Some of that was just a shift based on puberty. But also, that's about the time Mal was born, and some of it was wanting to be awake and doing things when it was peaceful.

James would totally live the 3 AM bedtime/noonish wake-up/afternoon nap life if it were possible while still taking care of a family. He sometimes forces himself to go to bed when I do, but it feels very weird to come home from my walk and have him awake and being productive. That's just not usually his scene.

One of the joys of early walks is various iterations of the sunrise.

Update: Daylight Saving just ended this morning, and I'm already in bed trying my best to stay awake until 9 PM so I don't wake up at 3:30 AM tomorrow!

When the party's over...

We fly home tomorrow and I'm having a lot of mixed feelings!

At two weeks, this is the longest vacation I've ever taken. There have been some moments of stress, but every day was unfailingly fun and we saw so many awesome things.

We started in Carlsbad, visiting LEGOLAND and the Museum of Making Music. We stayed three nights at the LEGOLAND Hotel, and it was terrific: price comparable to other hotels in the area, great theming, good pools, and a full breakfast buffet included.

Next, we took a Lyft up to Anaheim to visit Disneyland, Disney's California Adventure, and, of course, Downtown Disney. This is also where we celebrated Mal's birthday. We stayed four nights at the Howard Johnson Anaheim and it could not have been better. Great staff, clean room, super close to everywhere you want to be, great garden pool. It also has a small water park, but Mal couldn't have cared less about that. He was in the pool every day.

We rented a car to move up to Burbank, but that ended up being not hugely necessary. We did go to Bob's Big Boy, but our plans to visit the Griffith Observatory were scrapped because there were just too many people. Even visiting a small park to see the Hollywood sign, we had to park down the road. So many IGers! We did get an Amazon gift card from Avis and so that likely made the cost of the car about the same as if we'd taken another Lyft.

In North Hollywood, we stayed two nights at The Garland, a hotel built by Amanda King's mom herself, Beverly Garland. Her sons run it now. It was classy and retro, and I wish we could stay there a week. Loved it so much. Mal also loved the pool! We visited Universal and concentrated mostly on Super Mario World. I HIGHLY recommend paying $30 extra to get into that area before the park opens. Between that and single rider and hitting other rides within the first hour the park was open, we would have been finished by noon if we hadn't had reservations at... this place. It took me a while after I saw my charge today to remember what it was. Can you guess?

Ha ha. That's right: Toadstool Cafe.

We rented a car through AARP from Enterprise and drove from Los Angeles to Solvang. We stopped at Santa Barbara on the way, got our feet in the sand (and tar on our soles), then stayed one night at The M Solvang. We really enjoyed the Danish atmosphere, and the Danish pancakes, Danish sausage, and aebleskiver. 

The drive from Solvang to Yosemite was just over 5 hours, but it passed quickly. We finished up "Harry Potter and the Chamber of Secrets" (disclaiming Jo Rowling, shame she's sullied her legacy by being a bully). We stopped for lunch at Huckleberry's, which was billed as "Southern Cooking with a California Twist." We had to see what was up. It was kind of like Cracker Barrel meets Mark Twain in New Orleans.

At Yosemite, we stayed at the Yosemite Valley Lodge, the most expensive night of the trip! It was pretty rustic and no air conditioning (which normally would be no biggie, but they're experiencing a record-breaking heat wave right now!) but they had several fans we were able to use to keep the air circulating, and we were quite comfy! 

It was great walking around in nature before people woke up because at places like Tunnel View and the Mariposa Grove of giant sequoias, there were just to many people. I know! We were some of those people. But first thing in the morning, it was cool, quiet, and lovely! Even when we went to breakfast and it was pretty packed, it was somehow more laid back than everyone trying to get the perfect selfie in front of El Capitan (which was GORGEOUS, even with literally 80 other people).

Next, we made our way to San Francisco, where we stayed at the Music City Hotel and Rehearsal. It is technically a hostel, but we had a private room. We did have to use community bathrooms, and it was no big deal. This was the cheapest night of the trip: About $135, plus $28 parking. Not bad at all. Also no air conditioner but fortunately we were there the day before the record heat.

We definitely did the tourist thing and saw the Golden Gate Bridge, then went to Fisherman's Wharf, where we ate fresh seafood. We also visited Trader Joe's for snacks.

The next morning, we drove over the Golden Gate Bridge to Fairfield, where we went to the Jelly Belly Factory. We also watched a movie, "The Wild Robot," while we were in town. Then we finished our last leg, arriving in Sacramento yesterday afternoon.

Last night and this, we are staying at The Delta King, a de- and re-commissioned paddle wheel river boat. Like the Music City hotel, this place has tons of personality. 

I had returned the rental car last night, so this morning (before it got into the 100s), we walked to the Capitol building, and explored Old Sacramento. Later, we went to the California Railway Museum. 

Now we're just winding down and getting ready to head back. I'll be glad to see D, and Mal is excited to get back together with his friends. But also, it's been amazing not having to do the day-to-day minutiae of real life. And we've had such a great time together.

I wish we could take a year, slow down, and really see as much of the country as we were able. I wish we could all 4 go, and find a way to make it work in an oversized RV, maybe with two floors. But James needs to find work again, and we need to get back to a less expensive routine. We're heading into fall, so pretty soon I will be deliriously happy about the weather. 

Good times with some really amazing experiences. If you want to see a vast pictorial history of the fortnight, there's an album here.

Southern California Amusement Parks, some thoughts

We've officially been on vacation for a week, during which time we have visited 4 theme parks: LEGOLAND California, Disneyland, Disney's California Adventure, and Universal Studios Hollywood.

Those are all of the parks we'll be visiting on this trip (theme, anyway; we're going to a National Park soon!). We definitely had good experiences in all, and some less good. I'm going to start with the less good.

For each of these parks, we got there for rope drop (Mal was very worried that "rope drop" was an extremely scary ride he did not want to join; had to fill him in on the lingo). The first hour or two we were in each of the parks, we got to do a lot of rides (well, most days; Mal didn't feel great the day we went to Disneyland, and we wasted some time doing the monorail instead of riding rides that would be too busy to ride later, but he REALLY wanted to ride the monorail and we were trying to keep him happy). After a couple of hours, lines got longer.

However, there was a HUGE difference in what this looked like at LEGOLAND and Universal vs. what it looked like at the two Disney parks. 

This is the first time I've ever been to Disneyland. When we planned the trip, the days we were going were predicted to be fairly middling. Disneyland Resort was forecasted to have medium crows, with 4/10 at Disneyland and 6/10 at California Adventure. I just looked and the crowd calendars were just way off. Our day at Disneyland, crowds were at a 7. DCA day, 8. And we felt it. After noon, there were just wall-to-wall people. We couldn't have a chat as we walked around; we just let one person lead with the others following behind, bobbing and weaving and trying not to hit or cut off people. It was overwhelming and unenjoyable at points in a way I've never felt (even with pretty significant crowds) at Disney World. 

We DID enjoy the things we did and saw. But I don't think I'll be in any hurry to return to Disneyland. It's just too compact and too packed. I think what's happening is that Halloween is just so popular, the crowd forecasters need to understand that people are just going to pack the parks regardless. Also, it looks like Sundays are less busy that weekdays, which feels counterintuitive. In case anyone else is planning a trip.

LEGOLAND was the perfect speed for Mal. We got to go in half an hour early because we were staying on property, and we did the dino coaster first... whoops. Mal was excited, but it was WAY too wild for him. We learned that he just can't do any rides where you feel pressure from changing/redirecting inertia. But we followed that up with a tame boat ride he loved so much, we ended up riding it three times. 

We were able to walk around most of the park in about 5 hours, and saw the rest that we missed the next night. It was pretty cool: I hadn't planned a second day at LEGOLAND, but when I bought my ticket, they were having a buy one/get one sale and since their Brick-or-Treat Monster Party isn't a separately-ticketed event, we went over for that. It was super chill, we rode a couple of things we hadn't seen or ridden before, and then Mal finished it up with the dino boat ride. We got so much candy, we'll probably take some home next week. We've been snacking up on it in the room.

Today, we went to Universal. We'd paid $30 to be able to go into Super Nintendo World an hour before the park opened. That was a super choice. After an hour, James was able to ride the three rides in the lower lot before the other visitors got down there. Mal and I rode "The Secret Life of Pets" a couple of times with no wait between. The early-entry ticket also gets you onto the studio back lot tour with no wait, but there wasn't much of a line when we got to that, anyway. There was when we left!

We'd made reservations at the Toadstool Cafe and had our first and last (so only!) sit-down meal in a theme park. Then James and I both got to ride Harry Potter very quickly through the single rider line. Mal rode "SLOP" (what he calls The Secret Life of Pets ride) with James once, then he and I went shopping while James rode HP. We left the park a bit before 3 PM and had done everything we wanted to do, except maybe the Simpson's ride. I didn't want to double our ticket price to pay for the Express Pass, and it wouldn't have been worth it.

LEGOLAND and Universal were busy enough, but we had comparatively chill days at both of those.

I do want to talk for a moment about the Single Rider lanes... What an amazing time-saver! Between Lightning Lane at Disney (where you pay $30 extra to be able to skip the main line one time for each ride) and single rider, we didn't wait more than about 15 minutes for any ride, except Rise of the Resistance, where a lot of the "line" is an immersive experience, anyway. If your party doesn't mind splitting up, it's so much faster than the standby line, especially if you don't have Lightning Lane. In fact, Radiator Springs Racers doesn't have a normal Lightning Lane: You have to pay about $25 PER PERSON for just that ONE ride if you want to skip the line. But we got to do it super fast (it was under 5 minutes from the time I got in line until I was sitting in a car) because of Single Rider.

All of this to say: I know how to strategize avoiding crowds and lines. But, holy cow, that did not work at the Disney parks. We had fun doing what we did, but the experiences left us worn out and threadbare. We did not feel as chewed up and spit out after our days at the other two parks. 

Just a brief FYI.

We've done other stuff on the trip, too. We went to the very informative and fun Museum of Making Music, we watched the sun set over the ocean, we have spent HOURS by different pools (today is the last day Mal can swim on this trip; our next places don't have pools), and have enjoyed each other.

Tomorrow, we head north. We'll get to a beach, then to a little Danish village, a National Park, and eventually the capital of the state! I think we'll be ready for a day of driving instead of walking miles and miles!

If you want to see vacation pictures, they're here.