Category: SpoonieMom

Spoonie Parent E3: Three Naps

Posted on by Sarah

I haven’t been pacing well -> need more naps -> also behind on lots of things. Including more narrative editing. Today you get THREE NAPS. None of them ideal.

One of the hardest things about parenting with chronic illness is the distance between who I thought I’d be as “mom”… and who I am. 

I was healthy when I got pregnant.  My kiddo was 4, closing in on 5, when I got sick. 

He doesn’t remember me when I was able to keep up. 

Parenting is all about losing your aspirational view of it, though. I remember when he was 3 and I had an “outside myself” vision of what we were doing – Watching Cars 2 (the worst Cars movie), while he played with Cars toys and opened a new package of Cars underpants. 

Who even was I? How had I bought into this drivel? (Anything to get him to use the toilet, is how.) 

Before I had my kid I thought I’d want to be a homeschool mom – or at least a “doing lots of crafts and stuff together while hiking all the time” mom. And when he was 4, we were on track for some of that (not homeschool – my extroverted ADHD kid needed someone other than me in his days).  But now? Now I’m asleep on the couch when he gets home from school and he’s lucky if I can wake up enough to *suggest* a snack… much less have it ready on a plate with a smile. 

He’s happy, healthy, and independant. I’m grateful. But I’m mourning the imaginary mom I planned to be. 

I didn’t write these out so this is an approximate description.

My eyelids sag as I look at my book. “Can’t read anymore.” I look at the couch. “NAPTIME”

“Just right” as I arrange pillows. I lay down. I think “What would Chelsea think of this position?” and imagine my spine as an x-ray.

My eyes pop open. “CHELSEA!” I remember my calendar – Chelsea for PT, 1:30.

I look at my clock. It is 1:17. I can make it. I sprint to the car and drive!

I fall asleep on the PT table.

 

NAP 2

1pm Lying on the same couch, holding a phone. “I’ll just lay down for this meeting.”

Looking at the phone and pushing the camera off . “I don’t need to be on camera.”

1:15 pm (asleep, phone making noises, Sarah are you there?)

Sorry Team.

 

NAP 3

I am asleep on a couch in the sunshine cuddling a stuffed animal with my mouth open. My son pats my head. My husband takes a picture. They think I’m cute.

Spoonie Parent Journal, Episode 2 – More Fat Talk

Posted on by Sarah

I was working on some other things, but in honor of my excellent general practitioner who treated me so respectfully today, I’m going to keep talking about fatness.  

TL;DR
I’m interested in the GLP-1 drugs for treating metabolic dysfunction after long covid, and they also have weight loss properties, and it reminded me of a terrible experience I had with a fatphobic pulmonologist.

After Episode 1 over there I’ve been thinking a lot about weight. I really have come to terms with it pretty well, especially after finding how sick exercise makes me and knowing that I’m following as “healthy” a diet as I can (I’ve done a couple stricter diets in my life – Keto and South Beach – but they took a ton of energy to follow, were costly, and meat is often repellant to me right now – so there’s no chance).  But someone online – it sounds sketchier than it is, folks, Long Covid patients talk a lot online because we’re all our own test subjects and that’s the only place we get info- someone online mentioned GLP-1 drugs were like a miracle to them.  Fatness wasn’t mentioned- they said the anti-inflammatory nature of them, plus the metabolic whatever it does- feels like a cure.  Ok, I’m listening. 

After a couple of days poking at my insurance company’s website (they’ll pay for a couple brands as long as it’s not prescribed FOR weight loss, because, I guess, when it saves them money weight and health aren’t the same, and when they get to yell at you weight = unhealthy)

….aaaaaaaaaaaaaafter a couple of days poking at the insurance company website to make sure it wasn’t gonna cost 1500$ a month, and talking to a close friend who’s a medical provider about it casually and them being super positive about how great a drug it is, I made an appointment to chat with my GP. 

Turns out her clinic has a pharmacologist who specializes in these GLP-1 drugs and she’s ok to send me to her and let me try em.  For my blood sugar issues, for my cardiopulmonary issues, and for my sticky weight gain. As I told her – I wouldn’t fuss with drugs just for weight loss – I’m on enough drugs for things – but if it allows me to like, build muscle again? If I can go to the supermarket without crashing?  If there’s even a CHANCE of those things? SIGN ME UP.  Losing a few pounds and not having to buy yet another size pants would be great, because pants shopping sucks and insurance does NOT cover a new round of pants. 

So, flashback to the worst a medical provider’s ever made me feel about fatness. It’s not that bad but it really opened up a whole set of experiences I’d never had before. And it still irritates the shit out of me that she provided such incompetent care. 

COMIC TRANSCRIPT
2021 or maybe 2022. I’d been trying to get into a pulmonologist’s office for over a year.  I immediate clock her as a new doctor, a TYPE A baby millennial. She has that “willpower is everything” look. 



(arrow to doc) HALF MY AGE, THIN BUT TONED, MAKEUP AND JEWELRY ON POINT

(arrow to me) LOOKIN’ BEAT, PUDGY IN CLOTHES THAT DON’T FIT RIGHT, MAYBE SHOWERED

Hmmm. 

Well, being overweight can cause asthma. 

I had exercise induced asthma as a teen. When I was thin. It doesn’t FEEL like asthma – and the inhaler doesn’t help. 

Have you tried LOSING weight? 

I can’t breathe well enough to walk up the stairs outside this building without a break to cough.  I’ve been swimming and I’m getting SLOWER every week. It’s not working. 

Do you ever have heartburn?

I guess… sometimes… if I eat a lot of cheese? 

There you go. That makes asthma worse. 

Especially-  

(close up eyes) 

-with the weight. 

But… I got fat AFTER I got covid and stopped being able to breath right. 

Also asthma is up here, right? Because my problem is down here?

And sometimes it’s like I FORGET how to breathe and I have to think about it? 

(This was the weirdest symptom. With asthma, you can’t think of anything BUT breathing.)

And I don’t wheeze… 

Mmhm. Here’s an RX for heartburn meds and a lung function test to show how bad the asthma is. 

I’ll put in to return in 6 weeks to review the test. My assistant will schedule.

She might as well have said “Nice meeting you, fatty.” The judgement was pouring off of her. 

At the lung function test, I coughed so hard on the way in that my mask fell off and I nearly peed my pants.  After telling me the test was $1500 and not covered by insurance, it indicated that I did not have asthma. (Add insult to injury? I am still paying off that test.)

6 Weeks Later

So how’s the asthma going?

Um, the test said it wasn’t…. 

Huh…

Do you want to try a different inhaler?

I never called again. (I later got appropriate treatment from a private, cash pay Long Covid clinic.) 

Spoonie Mom Journal – E1

Posted on by Sarah

Let’s see if I can do a thing consistently! 
I’ve started journaling in comics format about the challenges and joys of being a chronically ill (“spoonie”) parent. I’d like to regularly convert them to legible things and share them, because I know for 100% fact that I am not alone in this experience! Here’s the real-life story that got me started.