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!