There have been less weird weeks

Do you ever just have a time where it feels like you can't get your head above water?

Nothing terrible has happened this week. In fact, we've had some really sweet times with friends and amongst our household. But it's been... something else.

We were supposed to take Rudy to the vet to get his glucose monitor affixed on Monday, but the vet didn't sent a prescription for the monitor itself (we did get the insulin and the needles), so we had to wait until Tuesday.

Monday, Malcolm and I went to the last summer movie camp show of this season, Bad Guys 2. It was pretty cute.

Tuesday, D and I went to the vet with Rudy. They showed D how to give him his shots, and they jammed a pin into his hip. I mean, that's the business end of the glucose monitor, but it was a whole production. D said if they'd opened the unit to try to put it on themself, they'd have closed it right back and called the doctor to make an appointment. 

The first shot seemed to work, and Rudy's glucose got within range.

Also that day, Malcolm and I went to our regular library/park group and he was actually positively peer-pressured into swimming IN THE LAKE! He is not a lake boy by any means. They had a great time, though, and it was nice to be outside, even though it's been in the 90s all week.

Later in the day, I called the doctor's office because Rudy's glucose was still within range. They said that unless the glucose was below 100, go ahead and give him the next shot. We did... and then I woke up at 3 AM because Aish was acting weird. I looked and Rudy's glucose was near the bottom of the "green" zone and still going down. I was awake for about 2 hours before it started evening out. The monitor will send out an alarm if it gets below 55, but we wanted to avoid hypoglycemia. I finally went back to sleep when it looked like it was evening out.

The next morning, we skipped the shot since his glucose was below 100. After he ate breakfast, though, it started going up again. I did a lot of research and this doesn't seem to be normal. He reacts A LOT to insulin. 

On Wednesday, I was supposed to take Malcolm to Volente Beach, but I asked James if he'd do it so I could rest. I'd also learned that because I paired my phone with the app, my phone had to stay with Rudy or we couldn't get a reading on his glucose since it's a Bluetooth connection. Sigh.

BUT James got called in to work (we need the 8-hour shift!), so I took Malcolm. We had a nice time and, again, "touch grass" is a command because it works. 

Wednesday evening, Rudy's glucose was 350, D gave him a shot, and it tanked again. This time, we were both awake from 1 AM until 4 AM before his blood sugar leveled out and we were EXHAUSTED.

By the time we woke up, his blood sugar was going back up, and while D didn't want to give him a shot, I talked them into it. Two hours later, James took Rudy in to the vet because Rudy was having trouble keeping his legs under himself. We'd given him some corn syrup but it wasn't moving the needle. The vet sent him back home, saying he seemed fine, but that we could bring him back in if he was hypoglycemic... which he was, and we did so ???

Low blood sugar is an acute situation that can cause death. High blood sugar is a long-term situation that can eventually lead to organ failure and diabetic ketoacidosis. I was beginning to feel crazy and hopeless. I think it was the sleep deprivation.

James told me he thought I'd smeared some eye makeup under my left eye, but it was just dark bags from two nights with incredibly interrupted sleep. I felt like a newborn parent whose baby is very ill. 

During that time, James DID take Malcolm to Lago Vista to the swimming pool. When they got there, though, they were told that a kid in swim practice threw up and they'd need 15 minutes to clean out the pool. They went to the hardware store and when they came back, they were told that actually, a supervisor was coming in from Austin so it would be another hour or two. 

James had to work at 6, it was already 2:15, so they came home. Malcolm was so disappointed.

Now that I knew that my phone had to stay at the house, I messaged the whole Friday Urban Air crew to see who was going to be there, since I wouldn't be reachable once we left the house. One family was going to see a movie, one family is out of town, but the other family said they'd be there. Friday plans in the bag.

The vet said to change Rudy to only a half unit of insulin, and only to give it to him when his glucose is over 300. We saw it going up last night, but we needed to sleep so didn't give him a shot.

Malcolm had a very emotional time, loving on Rudy and worrying about his dying. "I can't imagine life without him."

This morning (Friday), D gave Rudy barely .5 unit and it worked; he just needs a TINY drop more to get him into the green zone before it finally bottoms out and is steady. It seems more hopeful today than it did yesterday. 

Malcolm and I went to Urban Air and about 10 minutes after we arrived, I got a text (via my computer and wifi; I wasn't sure that would work until it did) from the ONE PERSON who said they'd be at Urban Air today that she just couldn't get out of bed and her kid didn't feel like coming. BIG SIGH.

Anyway, if you're wondering how we're affording all of this diabetic care for Rudy... we're liquidating one of our old accounts. It's just money, right? And actually, if we don't keep having to take Rudy in to the vet, switch meds, and all of that junk, the actual insulin and accouterments will be less expensive than the food we're feeding our senior cats! Did I mention that D is pitching in? They're really stepping up for this thing.

Now we have a weekend that will hopefully be pretty quiet. It's hot, so we'll be doing a lot of staying inside, except when James has to work in the garden center and when I have to water plants. 

Here are bookends of my day today: Sunrise walk, and golden hour plant-watering. 

This is my neighborhood and I get to see stuff like this on the regular. #blessed

This is my view when I'm squatting down filling my watering can at the rain barrel.

Rudy's New Diagnosis

 

This little idiot gots the diabetus.

We found out Wednesday and have been scrambling the rest of the week to get things ready to start him on insulin Monday. 

YES, insulin. For our cat. Because other than the diabetes (technically super high blood and urine glucose), he's very healthy for a 17-year-old cat.

Initially, I was overwhelmed. First is finding an insulin dose that works. After that process (expensive because every 10 days we have to buy a new glucose monitor AND take him in to the vet to get it placed three times), he has to have two shots of insulin every day for the rest of his life. 

Honestly, I can't do it. I can't commit to that. He could live 5-7 more years and I already have so much on my plate.

So D has stepped up and said they can manage his care, with me as a backup. James will do what he can, but his work schedule is so random and Rudy will needs shots at pretty much the same time every single day.

The last time Rudy went to the vet was about a year ago, and he had some kidney function issues, but those have actually improved (probably because of the copious amounts of water he's drinking). We took him in this time because he's going through the whole diabetic playbook: weight loss, extreme thirst, always being famished, sleeping all of the time (in all fairness, he has slept most of the time, anyway; but now he's lethargic even when he's awake). 

We've already changed his food to a high-protein, low carb wet food. He and Aish both seemed to like it at first, but weren't thrilled with it this morning. I finally got Rudy to eat a full serving, but Aish wasn't desperate enough. We'll feed her the same as what we feed Rudy, for now, because it's a senior formula and not a prescription food for diabetes. The higher protein and lower carbs might help her keep muscle mass that Rudy seems to have lost.

D is getting all of the supplies today, Sunday will be a little break in the action, and then Monday morning we head to the vet for shot coaching. Whew, I'm already tired and we haven't even started. So grateful that D is taking point on this because otherwise, we'd just be doing the diet change and hoping for the best. 

As I say with our trips: If our financial house of cards falls down, the couple thousand we're spending on this little adventure wouldn't have made the difference. Huzzah and happy weekend!

Cancer Scare(ier)

Two years ago when I was getting multiple biopsies to try to ascertain whether or not I had cancer in my neck, I wasn't that fussed about it. Either I did or I didn't, and if I did, then it was a simple matter of removing it surgically and maybe having some targeted iodine radiation if it looked like it had spread.

I was confident in my care team and just didn't think about it too much.

About a year after my surgery, my endocrinologist ordered a follow-up DEXA scan (to make sure my post-surgery efforts were indeed regrowing bone) and a neck ultrasound (to make sure everything was out). I told her that I simply could not afford imaging since we lost our health insurance. She understood.

I spoke with her for the second time since my surgery this week, and she said she was aware that I was unable to get imaging, but that there is also one lab that she's ordered twice and that I have not gotten since my thyroid was removed two years ago.

The reason I haven't had this test done is semi-complicated. She is sending lab requests to Quest but because I don't have insurance and instead pay out of pocket for my labs, I actually have to use a third party company (Ulta Labs). I go to their site, find the tests she wants me to have done, and buy them myself so that by the time I show up for the blood draw (Quest only charges Ulta $12 for this, and I can't see how they stay afloat!), everything's already paid for.

The issue here is two-fold: 1) The tests on the website aren't always called exactly what the doctor calls them. 2) Me. I'm the other problem. I'm not a medical professional so I'm trying to read the description of the tests and match them as closely as possible to what she wants. Stuff like a CBC with differential or a lipid panel is pretty straightforward. But is free T4 different than T4? I... don't know the answer to that and it seems like I should be an expert by now!

So... I haven't had a thyroglobulin test since my surgery. I've had several thyroglobulin antibody tests, and those have been negative (which is great; I shouldn't have Hashimoto's if I don't have a thyroid!). I thought that those tests meant we were in the clear. But no. She said neck ultrasound and thyroglobulin levels are how she makes sure we don't have a recurrence of cancer.

I finally understood and paid for the test she's been wanting all of this time. I had it done yesterday.

I'm pretty sure I'm fine, but the thought that I could have "persistent papillary thyroid cancer" (which happens in 10-30% of papillary thyroid cancer patients) hits different than it did the first time for one single reason: We no longer have health insurance.

James got laid off 5 days before my surgery in May 2024, but our coverage extended into August. It was over $60,000 and we did not pay a penny because we'd already hit our deductible for the year.

If I required further surgery and likely follow-up iodine radiation, I'm not sure what we'd do. It would be even more expensive. It would be a bankrupting-level expense.

Today at our library group, my friend pointed out that of the 48 countries represented at the World Cup, the United States is the only country that does not have universal healthcare. 

For me, the fear associated with finding out "it's back" isn't for my health. It's still a very survivable cancer. But it is how our lives would change when we were personally responsible for such an astronomical sum, especially adding in the nuclear imaging and all of the other pre-surgical stuff I had done before.

Fortunately, my lab results came back today and my thyroglobulin level is .1 which is practically zero; it will likely be 0 in another year or so. This is really good, especially since I'm no longer on a suppressing level of synthetic thyroid hormone (which I was for a year to try to prevent any residual tissue from growing).

Additionally, my surgeon is someone who has done tens of thousands of parathyroid/thyroid surgeries and I trust her completely. She took out a few lymph nodes for testing, and neither they nor my errant parathyroid were cancerous; it was just the thyroid. She said she thinks the inflammation from Hashimoto's almost made a little "wrapper" that kept the cancer isolated.

I've been fortunate. 

But it makes me mad that we're expected to rely on fortune, luck, the grace of any god, or our bootstraps to maintain our health. 

Elon Musk has just become the world's first trillionaire. No one should accumulate that much money. Especially when, if he just paid a fair share in taxes, we could absolutely use some of HIS fortune to improve the lives of hundreds of thousands of estadounidenses (I wish we had an English word for this). 

I guess keep your fingers (and toes) crossed for me that it doesn't come back or that it holds out until I qualify for Medicare in 12 years! And that Medicare is still around. Also Social Security. And please vote for a candidate who aligns with your wellbeing in the next election. I mean you, non-oligarch-level-rich person. Thanks.

Update, almost 2 years later: my neck

 Remember this?

It's that time back in May 2024 when I had a bunch of throat hardware yeeted to save my health and maybe even my life!

Briefly: diagnosed with hyperparathyroidism in early 2023 due to labs indicating high calcium followed up by labs showing high parathyroid hormone levels. Took a while to work through referrals for bone density scans, ultrasounds and a nuclear scan, needle biopsies, etc. before I finally found a parathyroid/thyroid surgeon who took care of everything. In the process, we learned that I had papillary thyroid cancer, but not until it was already out of my body and everything was good.

I just had labs done and the goodest news is that there are no thyroid antibodies in my blood anymore (and there haven't been since I've been tested starting a year after surgery), which means my body isn't fighting tumors because they all got removed! Yay!

But also good news is that my parathyroid hormone level is within range, meaning my three remaining parathyroid glands are doing their job.

My thyroid stimulating hormone is still a little low, but this is the first time it has been detectible since my surgery. This is because after having thyroid cancer and the removal of the thyroid, I was put on a suppression dose of synthetic thyroid medication to reduce the chances that any tumor material might get "fed" and grow. When you're overmedicated, your body doesn't send out thyroid stimulating hormones because you have plenty. That's not a good solution long-term, as being overmedicated can of course have negative health outcomes.

BUT this means that, as we've lowered the dose, we've allowed my body to move closer to equilibrium. My T4 free level is within range, but if it were just a little bit lower and my TSH were just a little bit higher, we'd be in that sweet spot and everything would be just peachy.

I don't have any symptoms from overmedication that I know of, and just like with my original diagnoses, we're just going on labs at this point. 

I feel really fortunate!

PS That picture was also from a few months before I realized that my hair was curly and I don't know how I missed it! 

More about that

I am sitting in the parking lot of The Home Depot waiting for James to get off work. Driving him to and picking him up from work was not on my agenda for the day, but while his knee is getting better, swelling in his ankle and stress on that area from how he's had to hold his lower leg to prevent pain in his knee means that he's wearing a boot. When he got into the car this morning, he realized that he probably couldn't drive with the boot but he definitely could not hold his knee at the correct angle to be able to drive at all.

I think he's a trooper for continuing to go to work, and very fortunate that he still has training to do so they are putting him on a computer to ensure that he won't be walking around all day.

It is helping me realize that I really enjoy not doing anything. Most of my days start pretty early. I usually get out of bed between 6:00 and 6:30, go on a walk, feed the cats, and get ready for my morning by getting some caffeine and doing some puzzle games online while everyone else is still asleep.

Since Malcolm stays up much later than I do at night, this is the one time during the day that is truly mine.

Except for right now. And I'm not mad, but I am tired.

When I first get up, I am making James some breakfast so he can take whatever medications he needs to take. If he has to go to work, we make sure that he is dressed before I leave for my walk. He has trouble putting on one of his socks and also getting his pant leg over his foot. He can't bend his knee very far, and his foot actually hurts now. 

After that is done, I do go on my walk. But this morning by the time I got home, I needed to help James get into the boot before he left. 

When he was out the door, I went in the bedroom to get dressed and ready to start my day with some caffeine and breakfast. I knew that someone had texted me, but I didn't have a chance to check it. He was halfway back to to the house (he is going the long way through the yard because the stairs on the side of the house nearest the vehicles are very deep) before I realized that he was telling me he could not drive the car.

I left a note for Mal and drove James to work, then went back and finally had breakfast at around 10 AM, which is super late for me.

Then I cleaned the kitchen and the bathrooms, my normal Friday chore.

When I finished, the groceries were arriving. I put those up then it was time to start on lunch because I wanted it ready when James came home, and also before D has to go to work at three.

Today, we are having a baked rotini, marinara, and cheese dish with a side of green beans. I had the pasta in the oven for about half an hour before I had to leave, so I did get to sit down and do my puzzles right around noon.

James should be out of the car at any minute, and then we'll go home and have lunch. I need to get Mal to Urban Air at 4 PM today, and then when we get home I will need to clean the litter boxes and feed the cats. This is something that James has been doing for about the past year, but he just can't right now.

When I write this out, it kind of just seems like a normal day. But it helps me see how much James does do around the house, for himself and for the rest of us.

One thing I did get to do this week was visit the newly-reopened Hope Outdoor Gallery.
It's near the airport now, and I swung by on my way to get D, who was coming back from Minnesota.

Caretaking

You guys. I'm tired!

Want to hear something I don't like doing? Talking on the phone! 

Want to hear what I did most of this morning? NOT talk on the phone, but wait on hold. 

And also, talk on the phone.

First, I need to let you know that for the first time in more than 8 years, James has come down with a case of gout. His right knee is so swollen, the doctor measured it at 1.5 inches wider around than his normal knee!

He just started his new job at Home Depot on January 1, and of course it involves a lot of walking around and standing at a register... and he's on crutches.

If I could have blurred this until you clicked on it, I would have.

So. Today.

First, I got a phone call a bit after 9 from my eye doctor. Last week, I'd ordered contacts from them and had gotten a whole year's worth because there was a pretty substantial rebate in that case. I had tried to file the rebate, but it said that my purchase wasn't eligible as the paperwork the office had given me was for last year. I'd left a message asking them to get back with me with the correct code, and they did! Yay! So I talked to their office first.

Then I called my doctor's office because I'm out of a medication I reordered on January 2, knowing I'd run out this past weekend. I realized on Sunday morning that I was out and hadn't even thought to follow up; they were just supposed to be delivered. Walgreens had in their records that they'd ordered the refill on January 5; my doctor said they don't show anything for months (I get a 3-month supply at a time). My doctor's office said they'd send in a new prescription.

I had to call Walgreen's, too, because I had put the order as delivery and now I need them to keep it so I can go in and pick it up ASAP. I've missed 2 days already. Fortunately, this isn't the thyroid meds or I'd be very ill by now! I don't sleep on that one.

NEXT, I got a message from D, who is in Minneapolis right now, asking if I could call their doctor to reschedule an appointment that got auto-scheduled for when they'll be on the plane home. They were out and about and didn't want to have to give personal information out in public. I called their doctor's office but then they couldn't help because D's an adult and I'm not on any authorization list. I tried.

But THAT reminded me that I haven't gotten the ID card for D's new Marketplace insurance, and they're going to need it. Allegedly, I can get it online, but that hasn't worked because they want me to set up a new profile for the plan, but D already has a profile with the provider because that's their existing doctor. 

So I called, and was able to order the ID cards. Again. But I wanted to talk to someone about how to print out a card in the meantime. I was on hold for more than half an hour. Mal showed me some videos, I did some stuff online, and after nearly one full hour... I somehow hung up when I moved my phone! 

Despondently, I called back. This time, I got routed somewhere that an automated voice gave me a group number and an ID, which I've never heard before. I tried adding that to the existing profile and... we wait.

Then I tried to call the VA to see if there were any way that I could come pick up the sleep study that James was supposed to go get today since he can barely walk. But infamously, the local VA clinic does not answer the phones. I still did wait on hold after they tried to patch me through. 

I drove James to the VA, but surprise, his appointment wasn't at our local one. He knew this back when he made the appointment, but he'd forgotten and I didn't even check. We weren't going to drive into far east Austin after all of that, so we just came home and the doctor called him.

After that, the doctor wanted James's old sleep study. He hasn't been to a regular doctor in years, since his primary care physician moved to another practice, so we decided we'd get in touch with their office to have them send EVERYTHING to the VA. I called them, and that didn't work. They had an option to chat online, so I tried that.

They asked me the practice name, so I guess it's a medical group? But then it turns out that since James went there, it's gone through two takeovers and is now managed by a huge hospital group in Austin. I have no idea who to contact or how to get his records now, but I did spend some time this afternoon trying to figure that out.

In the meantime, I made James a crunchwrap for breakfast. Mal just had leftover pizza. 

I had to water all of my outdoor trees and plants because it hasn't rained appreciably since the beginning of November. Mal played outside for a bit while I was out there. We also worked on a diorama of a level of Super Mario U based on Stone Eye Habitat. And played Uno. 

Mal is in a stage of wanting me to get and bring him all of his food, which he had gotten away from and I have to say it's stressing me out. I tell him to take care of himself quite often, but still just being on the receiving end of the constant asking takes some of my energy. 

I'm cleaning out the litter boxes while James is unable to access them. I did them exclusively for a long time, but a year or so ago, James offered to take over. Weirdly, I don't miss it.

I made James a big salad for dinner, and he's up and rattling around now (literally: the crutches). 

Mal really wants me to go look at D's hamster with him. 

We need to listen to a Spanish podcast.

I'm just tired and I want to do nothing/whatever I want to do the rest of the day. But that's not how it's going to go, so it's time to woman up and do all of the things before bedtime.

Getting into the Veterans Administration health system, Part II

He did it! James walked into the VA clinic last week and pretty quickly managed to make an appointment for labs (which he did yesterday) and another one to establish care with a primary care physician next week.

When he went in for the labs yesterday, he was very brusquely asked to present his eligibility card, which he does not have and about which this is the first tine we are hearing. The sparkling gentleman who checked James in stated that he did not care whether or not James was aware of the card; he absolutely has to have it. 

James asked what he needed to do, and the man told him that he'd have to go into Austin or up to Temple to request a card, but they did let him do his blood draw. Also, James verified that he could still see the doctor next week.

He mentioned that when he went back for the blood draw, it was done very quickly and with an absence of any kind of chit-chat. When I do lab work at Quest, they are super quick about it because they're good at it from doing it all day, but they do at least attempt to be pleasant. 

Oh well! We don't need coddling; just healthcare, so James will soldier on. (Get it? It's the VA.)

I did a bit of internet sleuthing and it seemed like we could request a card online, and my only guess as to why James wasn't told that was maybe because many of the vets using the VA health system are old farts who'd rather drive an hour and a half and wait in a waiting room than put their passport online?

Turns out that was a bit of a whole deal, anyway.

First, James had to set up an account with ID.me, and it didn't like our driver's license capture. The same thing happened to my dad recently when we were trying to verify his identity for something with Social Security. I believe this to be because of how the Texas driver's licenses, which are now the Real ID version, print the pictures. They're pixelated black and white snaps, and both tines I've tried to do this to verify an identity, the system has complained that the picture is "blurry." I've retaken photos in full light, all 4 corners showing, text crisp as can be... and it's just that the pictures are grainy. *shrug*

So. We uploaded his driver's license AND his passport, and then had to do a quick video call, for which we waited in/online about 25 minutes. That "call" lasted approximately 4 seconds, and that was that.

Except THEN we had to take a picture for his VA medical eligibility card. This one is on me: I kept not reading the full instructions, so we had to keep taking new ones. They are pretty funny, honestly.

1) Great pic! Oh, but it needs to have a neutral background.
2) Cute! I see, neutral LIGHT background. And neutral expression, mouth closed.
3) Okay, But it's kind of dark in here. Let's try a flash.
4) NO NO NO NO NO. Worse than a mug shot.

We finally got that done and the website said it should be a couple of weeks. Fingers crossed, people!

Welcome to the VA!

It's been a year since we lost our insurance, and James hasn't had a physical in much longer than that.

The other day, I decided to do him a solid and apply to the Veteran's Administration for healthcare. It wasn't a difficult process, and we received a communication today that assured James that the VA was diligently trying to set up his initial appointment.

There was a phone number for him to call, which was listed as: 1-800-4231-2111.

So.

We were able to Google it and there was just an extra "1" in what should have been the three-digit middle number. James called using my phone because that's where the clickable Google phone number was.

An hour into the call, James came in to me panicked because someone had answered the phone but couldn't hear James. We fixed that, James left again, and then came back a few minutes later.

Apparently the guy had told James that his chart was empty and they needed to fill out some more information so we could make an appointment. Then he put James on a hold that seemed to be the same queue James had been in before.

I was doing something mindless and told James to just leave the phone by me. About 15 minutes later, someone finally answered. I explained what was happening, and they said they needed to transfer me to the person who could set the appointment.

James came back in as the person was answering (that was only a few seconds, so huzzah!) and said he needed to make an appointment. Guess what?

The local clinic had closed at 4:00 PM (it was 4:02 PM at this moment) so we'd need to call back tomorrow. WE HAD CALLED AT 2:41 PM.

I asked for a direct number, and she said that they don't have one; you have to call the main number. She said you can also just walk in and make an appointment on site, which might be easier? That seems bonkers to me.

James tried to explain about the wrongly-rendered phone number but she didn't seem to understand what he was trying to say, as she explained something about how recently the extensions had changed. She was fine. She was trying. But this process was ridiculous.

Wish us luck for tomorrow.

UPDATE: I got them on the phone the next day, and they told us that James has to walk into the clinic to make an appointment because they just don't answer the phone. We're off to a great start!

Year-later endocrinologist follow-up, with bonus gynecology content!

I met with my endocrinologist today for the first time since my surgery. She told me that I needed to get a neck ultrasound ASAP, as I really should have gotten one pretty soon after the surgery. I wish I'd known because I had insurance until the end of August 2024! Now I'm applying for the Travis County Medical Access Program.

Also, the doctor mentioned that the medication I'm taking is actually lower than my weight would dictate I need, so she's wondering if that means part of my thyroid was left. I definitely hope not, because that would mean another surgery. I know there was a lot of inflammation, and I know guts look a lot alike so I suppose that anything is possible.

This wasn't a lot of fun when I had insurance, but I wasn't worried about the finances at all. If I have to do it again, it's going to suck, but it will suck a lot more than it did when I didn't have to stress over every penny (or tens of thousands of dollars).

To review, here's what I had done: Neck ultrasounds (one in an imaging place, two at my endocrinologist's office, and one in the surgeon's office), two sets of biopsies, a DEXA scan for bone loss, multiple labs measuring PTH and Vitamin D, a 24-hour urine test (the worst part of the experience by a wide margin), a nuclear scan (two+ hour procedure), a pre-op visit with the surgeon, the surgery and overnight in a surgical hospital, post-op with surgeon, more labs, and now prescription forever.  

Also, my regular doctor wants me to see a gynecologist because of some menopause stuff that isn't like "I feel weird" but like "that shouldn't happen and you need to get it looked at." And actually, I feel fine. It's hard to worry much when you don't feel off, but that's how it was with my hyperparathyroidism and Hashimoto's, so I know my body likes to hide dysfunction from my feelers.

I'm hoping if we get approved for the MAP, then I can stop obsessing over find the cheapest care for each specialty.

I hate healthcare being tied to a job.

My friend Adrienne told me that she doesn't care if I have to go into medical debt to take care of myself, so if that happens I'm just putting all of my medical providers on notice that Adrienne in Las Vegas (kind of) assured me it would be JUST FINE. You'll get $200 a month for the rest of my life, so I guess you'd better do a good job to make sure that I'm going to be around to pay it for a long time.

When you see it visualized like this, it seems like it wouldn't be any big deal to get the thyroid out! But also... that she removed the thyroid but kept 3 of my parathyroid glands in there is pretty unbelievable.

Remembering Sondra and Jude

In 2018, I got off of Facebook for mental health reasons, and it worked! Unfortunately, I have missed some major life events in the lives of people I consider dear friends. I'm going to tell you about two of these people.

Sondra, Jude, and I met (along with others like Jennifer, Jade, Amy, Stacy, Liz, Angela, April, and Aura) on a Yahoo! Groups page dedicated to Rockapella in the late 1990s. I have SO MANY stories I could tell you about the Rockapella days, but we're going to stay on track here, starting with Sondra.

Sondra lived in the midwest and had been in a small orbit of the town she grew up in her whole life. She was several years older than I was (I remember feeling weird when she turned 40 as I was still freshly into my 30s), and had worked at a big box retailer her whole adult life. She lived in an apartment over a convenience store, that also had a view of a major waterway. 

Sondra was a photographer and loved doing portraits and candid shots of friends and family. She would also capture unusual boats coming down the river by her apartment. She had an old cat she loved very much.

Her family had been through a lot, including the death of her mother when she was young, and the loss of a house to a fire before she lived independently. She adored her father, and was close to her sisters and their families. She loved kids so much, though she never had any herself.

At some point during my late 20s, Rockapella was coming through Las Vegas, where I lived at the time. A lot of people I'd only met online were coming into town to see them, but Sondra couldn't because she didn't have the money. I knew that not having money was a recurring theme in her life.

We didn't have a lot of money, but this was pre-kids, so I figured that I could swing the airfare and get her a ticket when I bought mine. I floated the idea, and she thought about it. She'd never been on a plane, much less traveled that far from home and alone.

After talking to her family, who discouraged Sondra from visiting me because I might be a man and regardless would probably kill her and bury her in my back yard (remember, this was before it was normalized to try to meet people you'd only interacted with online), Sondra decided to come out!

We had a great time! I think my ex-husband didn't want to deal with anything remotely related to Rockapella, so he left town for a few days (I had and still have no idea where he went, and honestly couldn't be bothered to think about it at all). I had just found out I was pregnant, and was a little nauseated and sleepy most of the time, but we went to the Fremont Street Experience (when it was new), bummed around on The Strip, spent time with my family (she was enamored with my niece Hannah), and chatted a lot.

I did not kill her nor did I bury her (alive or otherwise) in the back yard.

Several times during the week, she "spoke" online with the aforementioned Jude, another Rockapella fan she'd started to kind of long-distance date. They were super cute, but I also remember one night being just beat and ill and lying on the couch, grateful that she had something besides me to occupy her. But she was having so much fun chatting that she kept yelling to keep me apprised of their back-and-forth.

Sondra and Jude had a lot in common. Although they were only a few years older than I am, they were both old souls. They loved Lucy and other contemporary television series. I guess an acapella vocal band is kind of old-school. But they were both sort of unimpressed with more modern entertainment, and really bonded over nostalgia. 

So... I thought it might be neat to post the one picture I have that Sondra took of her and me at Red Rock Canyon, and I don't have it anymore. Not to go on too bleak of a tangent, but I'm not kidding when I say that my ex-husband hated anything to do with Rockapella. At some point, I think I got rid of anything remotely related to that in order to try to "save" a marriage that was never going to be fixed.

After the concert and meeting so many new faces who would go on to be long-term friends, Sondra flew back home. That trip gave her the confidence to make plans to go see Jude in person. They saved up for a long time. She worked in retail, and he worked at a local grocery store.

Jude lived in Louisiana. I probably got to know him better than I would have otherwise because of our mutual friendship with Sondra. He was a little sillier and more light-hearted than she was, though he'd certainly seen his fair share of adversity. One of his two brothers had died pretty young. Like Sondra, he had grown up and remained working-class. 

I do have pictures of both of them, from a cheesy pre-Photoshop (to me, anyway; apparently PS was already 13 years old at this point) thing I made to hype Sondra up for her trip. I scoured the internet for pictures of them separately and did... well, this monstrosity.

 

Over the years, Sondra visited Jude a few times and he might have gone to see her once. I don't remember exactly how it happened, but they eventually split up and it came out that Jude was gay. When we spoke, he insisted that he'd told Sondra "exactly what I am" from the beginning and either she didn't fully believe him, or thought love could "fix" things.

Jude and I actually got closer after this, because at least one member of Sondra's family had reached out to him and been very accusatory and chastising. She told Jude that he was bad to break Sondra's heart and that he needed to change his ways or he'd end up in hell. 

First, I thought Jude was a stand-up guy and I liked him. Second, I unknowingly dated 2 gay guys in high school, and I could totally empathize with him in a way that I wish I'd had my "gaydar" up and could have empathized with the young men I dated. But it made sense: Sondra was a woman, like me, whose femininity isn't performed over the top. And having a long-distance girlfriend/fiance is very comfortable for a man who cannot, for whatever myriad of reasons, live a fully authentic life.

I knew that Jude had loved Sondra in his way (the same way I think the guys I dated cared about me and had no intention of hurting me). And I knew that he didn't deserve to be attacked or condemned by someone who had maybe only ever met him one time.

As time passed, of course our Yahoo! Group slowed and shut down. Everyone was on Facebook, so that's where we kept up with each other. Less frequently, of course, as we all matured and had busier IRLs. 

One day, Sondra was at work and this guy she'd gone to high school with turned up. He was expressly looking for her (they were both well into their 40s at this point). He told her that he'd had a crush on her and very quickly asked her to marry him.

He was a kind and generous guy who ended up telling her that she could quit the retail job she had hated for three decades to concentrate on her photography. They still lived in her little apartment over the store, and they seemed very happy.

One thing I noticed about Sondra, though, was her predisposition to kind of having a "Debbie Downer" way about her. Maybe she always did, but as I loosened up, I saw it more .There was a time or two she'd comment on something I put on Facebook and be negative about it in a way that got on my nerves. I sniped back a time or two, and we'd go for a while without communicating, but we were still always friendly.

Jude went on with his life and started to come out of the closet a bit, at least online and kind of away from his home circles. I never asked too much, but he seemed like he was happy enough, just that he wished he could find someone for a real relationship instead of someone who was just looking to use for whatever. 

After 2018, I pretty much lost touch with both of them. I do sometimes check in on old friends to see what I can see from their public profiles. In 2023, I sadly put together that Sondra had been in treatment for cancer during the second half of 2022. She had posted something like, "I am hopefully going home tomorrow. I miss my cat! It's going to be hard learning how to live with diabetes and heart disease alone with the cancer, but I'm taking one day at a time."

She never made it home. 

I scrolled through hers and her husband's profiles. It looks like she'd had a great support system, with the volunteer fire department holding a benefit to raise money to help with her medical expenses. I am so sorry that she's gone. She was still in her 50s. I never met nor interacted with her husband, but I hope he continues to be happy and do well.

One of the last times I interacted with Jude, he was telling me that his phone had just died and he didn't have any money for a new one. That's how he was using apps to meet like-minded folks in the area, and it really cut him off from a social window that was hard to come by. 

James had just upgraded his phone (which was rare; we don't usually get a new phone until an old one dies, but he'd done a lot of research on PlusOne and had to make the leap). so I asked Jude if he wanted James's old phone. We sent it to him and made sure he got it up and running. It never occurred to me to tell him to grab my phone number while he was setting it up.

We're going to Louisiana soon, and I thought it might be cool to finally put a face with the name and voice I have for Jude. I figured I could find him on FB and try to send him a message, but I was surprised with how many people have his name. I googled his name and city, and found... his obituary. He just died last year, from complications of diabetes. He was 55.

Aside from the normal sadness that comes with having friends die, I firmly believe that ZIP codes and household incomes growing up have a lot to do with the fact that I'm still alive and my friends are not That part makes me mad. I don't know what to do about that, so I'm just sitting with it for the moment.

I do take comfort in the fact that Jude, too, had a support system. There was a barbecue fundraiser for him a few years ago to help raise money for his medical expenses.

Both of my friends were well-loved.

Both of them had to raise funds for their medical care, though, which is extremely cruel and should offend anyone who believes that life is sacred,. Access to preventative and ongoing care should be a human right. If you don't believe that, then you are one of the reasons my friends are gone from this earth much too soon. They worked hard. They simply could not afford the care that they needed to ward off problems before they started, nor to combat disease once they were ill. 

And so I remember them both with sadness that our system works like this, but with a heart full of beautiful, complicated memories. I'm better for having known both of them.

...

OH! And I just remembered: I don't think my ex-husband knew that Sondra never paid me back for that airline ticket. I lied out my ass about it, because it was one of my little rebellions. So if you are reading this, sir... well, I won't type it in case my mom comes across this post.

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.

Final (maybe? hopefully!) bit about the parathyroid/thyroid drama

Yesterday, I had my follow-up with my surgeon. She took the Steri-strips off of my incision site, and I had been thinking, "Yay! No more neck coverings!"

Well, two things: 1) I cannot let sun get on the scar at all, and I am only to use Aquaphor on it 3-4 times a day for the next two weeks. After that, I am to use silicone tape for 6-12 MONTHS to protect it. Yikes! Scar care is definitely a long game! 2) That area is SO SWOLLEN. As my regular endocrinologist said, "Your tissue is mad!" So for now, I'm wearing false collars and scarves. And it's hot. Let's all feel very sorry for me. Thank you.

And I have one more thing to add regarding the whole "getting diagnosed and surgically healed before I knew there was a problem" angle:

I followed up with my surgeon yesterday, and my endocrinologist today. Of course, everything that was taken out of my neck (one parathyroid, my entire thyroid, and several lymph nodes) was biopsied. The 9 millimeter adenoma on the left lobe of my thyroid was papillary thyroid cancer. Thing is, there was another adenoma, 4 mm, on the right lobe of my thyroid that no one had visualized (I had multiple ultrasounds, the nuclear Sestamibi scan, and an accompanying CAT scan that went all the way around to the back of my neck.

That smaller adenoma also tested positive as cancer.

The parathyroid and the lymph nodes all tested negative for cancer, and the surgeon said she wasn't sure exactly what happened, but that thyroid cancer is very slow-growing, and also maybe the inflammation from the Hashimoto's kind of created a "shell" around my thyroid so nothing spread.

So, there we go. I'm cancer-free before I even knew for sure that I had cancer. Kind of makes me glad my parathyroid started acting up, because otherwise, who knows when we would have found this.

Also, I'm grateful for my surgeon and her confidence that I needed to remove my entire thyroid, even though a support group I am in suggested getting a second opinion. I trusted her and she was right. She saved me another surgery down the road. This hasn't exactly been a nightmare, but it's not something I care to repeat.

I'll test for antibodies again in October. They should all be gone by then, assuming that there is no remaining cancer. If anything ever comes up in the future, I might have to get radioactive iodine treatment to kill any microscopic thyroid material left in my neck... but I'm planning for that not to happen, so I haven't even looked up what that involves. 

My remaining parathyroids appear to have stepped back up and are maintaining my calcium levels. I test that and my thyroid hormone levels in July.

Continue to feel very fortunate and grateful.

The Rich Get Richer

One last thing before we get off of the subject of my glandular heave-homent:

This whole thing started because we had insurance (have, until the end of this month). Since we have insurance that fully pays for annual check-ups, I've gotten bloodwork done every year for the past 5 years. There have been some things, like low whole blood, that required some looking into but were determined to be nothing. 

But in January 2023, I had high parathyroid hormone level as well as high calcium. Those two things both being elevated is an automatic diagnosis of hyperparathyroidism, and the only way to treat it is surgery. 

Getting referred to a good surgeon led to the suspicion and diagnosis of Hashimoto's disease, and all of that resulted in my having my thyroid and one parathyroid removed.

What had already happened was that I have experienced some bone loss (would be characterized as "osteopenia" if I were post-menopausal), and that I was frequently eliminating cloudy liquid as my poor little kidneys tried to flush the excess calcium out of my blood.

What could have happened was hypothyroidism, and any of several more advanced autoimmune disorders like Crohn's, Grave's, or lupus. I also could have had permanent nerve damage at my extremities due to wonky calcium levels. I could have fractured my hip. 

But I didn't.

We knew what was going on because I had access to adequate, thorough health care. Through James's work. Which he doesn't have now.

I went most of D's life without insurance and, consequently, we only went to the doctor's office when there was something overtly wrong. But in this case, if I'd waited until possible symptoms of thyroid disease had presented themselves, my body would have definitely been worse for the wear.

So I'm grateful.

I don't know what's going to happen in terms of our insurance after the COBRA stipend runs out. Tech employment is rough right now. But I do know that everyone deserves preventative care (in addition to acute care, obviously). Why is that a controversial ideal?

Recovery

First full day back home. I took a nap this morning from 10:00-10:30 but was otherwise pretty normal, energy-wise.

James filled you in pretty much... he just left out that I had a parathyroid gland removed, also. The surgeon said that when they took the left anterior parathyroid out, that my parathyroid hormone level dropped into the normal range, and my calcium dropped to below range but not zero. This means that my 3 remaining parathyroid glands appear to be functioning properly, even though they were dislocated from their former home (my thyroid, which James already told you I had removed).

I'm waiting to hit the Day Three wall (I've heard days 3-5/6 are the hardest in terms of recovery) but so far am feeling mostly normal, minimal pain in terms of having a sore throat, and though I walked much more slowly this morning that is typical, I did manage to make it 2.5 miles.

My follow-up with the endocrinology surgeon is a week from tomorrow, when I'll get my Steri-Strips removed. Until then, I'm camouflaging my neck because there's some blood and nobody wants to see that. But I can tell under the strips that the cut is tidy and should heal to almost invisible. Apparently, I have a "nice neck crease" where the incision will hide (read: wrinkles and fat). 

Probably my biggest struggle is going to be not to get into my head about the fact that I now require synthetic thyroid hormone to live. If we have some big societal breakdown or something that prevents the production and movement of medication, I'll literally shrivel up and die. So wish me luck, losers!

Super grateful for all of the help we had to make this week go more smoothly: 1) Thanks to Indeed for laying James off so he didn't have to rush back to work but was able to be a lot more involved in the minutiae of taking care of the house and taking care of me. 2) Gracias to my parents who took us out for dinner the night before my surgery, and then spent the night in a nearby hotel so they could be here at 6:45 AM to hang out with Mal while we went to the hospital. 3) Sincerest appreciation to Kristen, Mal's friend Kona's mom, who let Mal go home for a sleepover after Tuesday group. 4) And also danke to my sister for showing up the day after surgery to bring me back home, and for hanging out and visiting. (She ended up having a surprisingly full day when, after she finally returned home, there was a tornado in Temple and she and Ken and the boys went up to help Hannah and Aaron secure their apartment and start to clean up a bit. Everyone's safe, which is the important thing.)

Bits and Pieces

Hello, fellow Americans (and any other nationalities, honestly... all are welcome)!

Yesterday was Mother's Day in the US, and my local family came out to my house to visit. We had a nice afternoon hanging out, and I didn't have to do anything because James and Mal picked out snacks, my Dad brought food and plates, and it was just a fun time all around.

Today, I had an early appointment at a radiology office, not realizing that I was getting some nuclear imaging and a CAT scan. Woo hoo. Fun times. Before going into the imaging chamber, I got an IV of radioactive material! About two short hours and I was done. What a psychic workout, though.

First, the radiologist was trying to keep my elbows in place (the camera automatically keeps 1 inch between itself and a body, and she didn't want me moving my arms and making the camera back off). It was kind of like swaddling, and it was comfy enough... until she started lowering the imaging plate to within 2 inches of my nose and my claustrophobia kicked in. I pulled off the sheet and promised that I would keep my elbows tucked under my own power. She offered to try something different and I told her that if I felt restrained, there was no way I could do it. So we kept my arms free and everything was relatively fine after that.

I had 3 different 5-minute scans, during which I could not move. I was kind of restless after those, but THEN it was time for a 25-minute scan! That one did a number on me, as I tried to relax and maybe even nap since I'd gotten less sleep than usual the night before. But my body kept bringing me back into the moment by suddenly detecting an itch in my right ear canal. Then making me hyper aware that the muscles in my leg were clinched and I needed to relax. Then noticing that my pinkies were falling asleep from my crossing my fingers, which was how I was keeping my elbows from flopping around, so I couldn't really move them but I also couldn't forget about how much I wanted to move. However, when the machine beeped that it was over, I'd thought we were only at the halfway point. 

After the long scan, I had to go into a CAT scan machine still without moving because it had to line up with the previous images. The tech had to "stitch" the pictures, and I was trying not to say anything until there was a natural break, but by then I REALLY needed another visit to the restroom (one of the symptoms of the hypercalcemia caused by hyperparathyroidism is that my kidneys are always trying to jettison calcium, thus pulling moisture from my body and causing me to need to evacuate a minimum of hourly). Fortunately, she was able to let me go before we did the 3 final 5-minute scans.

Shortly after I got home, James had deja vu from last spring, when Indeed announced that it was laying off 8% of its work force. This time, James didn't keep his job, and he said he's mostly numb about it, but I think it will end up being a good thing. Morale has tanked since last year's down-sizing (the first mass layoffs Indeed had ever done), and he hasn't been happy for a while. 

Classes and extra-curriculars are shutting down for the summer. Mal has been out of Wednesday classes for two weeks. This Wednesday, we're going to to to the splash pad where we had his birthday party. I'm probably going to plan an activity every Wednesday that I can, just to avoid general malaise (although I love being home). Since Mal is enjoying public transit so much (we took the bus to Urban Air last week and had a great time), I'll see what I can find that is nearby convenient stops (we had to walk almost a mile between the stop and UA, but it was fun).

Thursday is Mal's last homeschool open gym until fall. And our Tuesday group is always lighter in the summer, with people traveling and dealing with summer custody arrangements.

But Mal's looking forward to YMCA movie-making camp in about a month! It'll be his first sleep-away camp, and I hope it's as magical as Camp Coral (a SpongeBob series), which is why I think he was interested in camp in the first place.

This last thing I'm going to tell you about... well, if you're squeamish or just don't like TMI, then stop reading and we'll see you next post. 

If you're still here, allow me to say: I'M TOO OLD FOR THIS! And by "this," I mean continuing my fertility. I, too, had deja vu today. We were in Montreal exactly a year ago (sigh) and the last full day we were in town, I took Mal to an indoor playground. We spent a LOT of time on public transit to get there. On the bus ride, I felt a kind of "swoosh" feeling that was weird. When we got to the playground, I went into the restroom and there was blood EVERYWHERE. I was wearing a menstrual cup (which I've used without leaks since 2010), AND period underwear. And still, my khaki slacks were absolutely drenched in blood.

I had a stain stick and pretty much used it up. It kind of diluted the visible blood, though it definitely looked like I'd peed myself. Oh well. I wasn't going to end the day early and travel an hour back to the hotel room just to change. I moved my stuff from a cloth seat to a leather chair and just dealt with it. It was fine; I didn't make a mess anywhere but on myself. Then Mal and I went to McD's before heading back several hours later.

(It's the next day).

Since then, I've had one overnight situation which hadn't happened since I stopped wearing pads in my early 20s. I determined to remember to change out IMMEDIATELY before bedtime from then on, and have done so.

But yesterday, as I used the restroom prior to my eternal scan situation, I realized I'd started my period. I'd gotten up in the dark so hadn't seen any clues at home. But by the time I made it to the radiology clinic, I suppose I'd been free-bleeding for about two hours. I didn't have on my period underwear (my periods are extremely irregular -- thanks, perimenopause! -- and I didn't get the usual two-day warning of hormone-induced stress this time. 

I had my cup with me as always, but had to do the whole procedure knowing that I'd bled straight through my jeans. Ehh. Got home, changed, was fine the rest of the day.

Then last night, I got the same feeling as on the bus a year ago. Got up and there was just blood EVERYWHERE. I don't understand what or how it is happening, but I'm over it. Cleaned up, went for a walk, could tell I was leaking. Had to change and clean up AGAIN when I got home.

Friends, I am almost 52 years old! This nonsense needs to stop. At least I will probably be at least mostly finished by next week. I don't want to have to do the pad/mesh underpants combo I discussed with the surgical nurse.

Parathyroid Update

Can't believe it was more than three weeks ago when I wrote that last entry! Time flies...

Since I posted that, we had a visitor for a couple of weeks (D's friend), Mal's school finished up, and temperatures are letting us know that summer is on its way.

I also did go see both my endocrinologist as well as the endocrinology surgeon. The endocrinologist was very empathetic about my frustration and said that she has concerns about medical care in Austin. There are just more people than there are doctors to meet the need. She said, "I'm here every day..." and then told me to come back in 4 months, but then the first available appointment was in 6 months. She did add to my notes that I was frustrated with how long this process is taking.

Then a bit later, I went to see the surgeon. She asked to ultrasound my neck, and immediately asked, "Has anyone told you that you have Hashimoto's disease?" I told her that I had not gotten that diagnosis, and she said that just based on what my thyroid looks like, she's pretty sure that I have it. She did an u/s on herself and showed me what a "normal" thyroid gland looks like compared to mine (it all looks like TV static to me, but I trusted her), and then she sent me off with lab orders to check some thyroid antibodies that would support her hypothesis.

I did the bloodwork and have a final different kind of scan scheduled for a week from today. The bloodwork came back... well, I have Hashimoto's.

I feel SO lucky. I know people who have Hashimoto's, and they often suffered for YEARS before getting a diagnosis. As far as I know, I'm asymptomatic, though the surgeon said that it was possible that I'd been having slow-onset symptoms and they're just normalized.

She did mention that I might feel better after surgery when my calcium level is corrected, and I might not feel any different at all. But that you get parathyroid surgery for the long-run, to avoid bigger problems down the road. So even if I don't feel magically more energetic, with no GERD, etc. that it's still the right move to avoid kidney damage and further bone loss.

My surgery is in two weeks, and I'm excited to get it over with!

Meanwhile, life goes on pretty normally...

Adventures in Medical Care (Parathyroid Madness!)

It's been a year, people.

Actually, it's been slightly longer, as bloodwork from January 2023 indicated that I have hyperparathyroidism (namely that my parathyroid hormone level is high while my blood calcium is also high; they're supposed to have an inverse relationship when all is working properly).

My calcium is just over the border of high, so I haven't needed any treatment for that, but we have realized since last fall that I do need surgery to remove whichever parathyroid gland(s) is(are) responsible for the misfiring.

During the past year, I've had further bloodwork, a couple of urine samples (including the 24-hour one I mentioned previously), a neck ultrasound, and two biopsies of an adenoma on my thyroid.

Everything keeps confirming hyperparathyroidism, and a bone density scan revealed that I have osteopenia, which is some loss of bone density but that can but isn't necessarily a precursor to osteoporosis. The problem is that the parathyroid is supposed to sense when your blood calcium is low, and it "tells" your bones to release some calcium to make up for it. Hyperparathyroidism is when your calcium is fine (or, in my case, borderline high), you're continually leeching calcium for no reason, thus putting your bones at risk.

Another risk is kidney disease, as the excess calcium can cause the kidneys to have to work harder to filter it out. My most recent urine sample revealed a lot of stuff that shouldn't be in this waste product: epithelial cells, protein, too-high ph... it's just a cloudy mess. 

SO... I was referred to an endocrinologist early last year and to an endocrinology surgeon months ago. I had an appointment schedule with the surgeon for March 25, but apparently the doctor ended up planning to be out of town and they rescheduled to June. 

This was an inconvenience but not a huge problem until recently. My first biopsy came back with no results, so we had to do it again. The second time, the endocrinologist took an extra sample to send off for DNA testing in case the "standard" assessment was inconclusive again.

It wasn't. It came back "suspicious as cancer" (of the thyroid; parathyroid cancer is extremely rare and you're not supposed to do fine-needle biopsy on the parathyroid as you risk "seeding" any cancer that might exist, since the gland is about the size of a grain of rice) and will likely result in my having to have half of my normally-functioning thyroid removed. That might fix the hyperparathyroidism, as it's right up against my left anterior parathyroid gland. But I'll find out more when I see a totally different endocrinology surgeon (one who is widely respected as an expert in this field) in TWO WEEKS (rather than two months; sorry, Baylor, Scott, and White... you just couldn't perform adequately this time).

It seems like during the surgery, they at least want to "visualize" all of the parathyroid glands just to make sure they're okay. Some people have more than 4; others have visualizations on only a few because one of them has moved into their chest somewhere. I don't think that's the case with me. I believe the ultrasound tech was able to find all of my glands.

Anyhoo, I have an appointment with my endocrinologist Wednesday and can't wait to tell her that I'm pretty disappointed in the care I've gotten so far. Much of what I've learned about my condition, best practices, and what is going to happen in the future has been from an online community. They're the ones who made it clear to me that I didn't understand what was happening, and who prodded me to read through the medical notes and imaging results to look for specific things. I feel like my doctor should have explained everything more clearly, since I know doctors don't love people consulting "Dr. Google."

In terms of symptoms, I'm not aware of any. I do experience GERD, and have for years before my numbers were wonky. Three weeks ago, I got off of omeprazole because it's not really for long-term use, and it runs the risk of both bone loss and kidney disease, and I figured my body did not need another threat to deal with. So far, I've been less-than-ideally comfortable, but I'm managing. I'm also hoping that maybe surgery will help a bit with that? Excess calcium triggers your stomach to produce more acid.

I might occasionally have fatigue and brain fog, but it's hard to know whether that's from perimenopause, having a 9-year-old as a middle-ager, or hyperparathyroidism.

What I'm saying is that I feel "normal," which is pretty darn good. But if I had surgery and felt even better, I would not be mad about it! I'm looking forward to getting it scheduled and over with, so I can fully recover before our trip to California for Mal's 10th birthday!

"Fun" medical week

Do you ever have one of those weeks where it feels like the only time you are sitting down is when you're driving? Last week was one of those weeks!

Tuesday was normal; we had our homeschool meet-up at the library then went down to the park. We had Mal's dental stuff scheduled for Thursday, and I'd had to change a dental appointment of mine to later the same day, so Nana and Pappy agreed to come down and spend a few hours with Mal as he woke up, shook off the anesthesia, and got used to his new mouth stuff.

However, Wednesday afternoon, just as I was getting ready to take Mal to a different homeschool meet-up, D came in complaining of severe abdominal pain. This was the third time it's happened, way beyond just a stomach-ache, and the general physician had told D to go to urgent care/ER next time. So I took D to our in-network E/R but had to drop off and drive over to the transmission garage where our bigger car had been for a week.

The transmission was out and needed to be replaced, but the replacement would cost a couple of thousands of dollars more than I paid for the vehicle several years ago, so we were donating it to our local NPR station. We'd left it at the garage because James noted that if Mal had to watch the car get hooked up to a tow truck and driven off from our driveway, he'd have a breakdown. The tow company was coming to get the vehicle at 1:00 PM on Wednesday, so I had to get the title to the transmission place before they got there.

D had several tests run, was given some pain meds, and a couple of prescriptions, as well as a referral to a G/I. We had to pick up groceries on the way home, so it ended up being the whole day. 

Thursday, we had to be in Bastrop (which is an hour away with no traffic, so arrival at 8:15 AM was a slog through rush "hour" Austin) super early. Mal was fine until we actually headed back to the room, and he managed to put up a very good fight against four adults: James, the dental hygienist, the anesthesiologist, and me. His physical strength almost matches his strong will, so it took a while for him to nod off. 

Two baby teeth pulled, two missing caps replaced (and nerve treatments for those two teeth, since they'd been exposed for two and three years), two existing caps removed and replaced, one new cap on a baby tooth, two small holes (no obvious dental caries yet) on 6-year molars packed with white filling, and dental sealant on remaining molars. Whew!

Mal actually woke up in the office after the procedure. He was loopy, but aware. When he went under anesthesia at the age of 4, he just slept for five or so hours afterwards. 

We got him out to the car, and his biggest complaint, besides that it felt like everything was spinning, was that we'd reclined him in the front seat, and he's not supposed to be in the front seat.

Waking up (kind of) on the way home

We got home about the same time that Nana and Pappy got here. I fed them lunch, then had to go to my appointment for the second half of my deep cleaning. It was very anticlimactic compared to Mal's morning, and he was awake and himself the entire time his grandparents were here.

Friday morning, we had a kind of last-minute trip to the vet for Carol, who we realized during the week was using the bath mat as a replacement litter box. The vet determined that she likely has a UTI and put her on antibiotics. D had the idea that maybe Carol doesn't like our Modkat top-entry litter boxes (blasphemy!), so I bought her a *shudder* open litter box (it does have some privacy panels, but the front is easy-entry) and... D was right. Between the meds (which James and D are administering like pros), the new litter box, and an investment in puppy training pads, things have gotten substantially less frustrating for everyone. Well, maybe except for the medication administration, which Carol does not appreciate at all.

Friday afternoon, Mal had his bi-weekly play date at Urban Air. While we were there, a severe storm moved through the area, so that was dramatic. Fortunately, I don't think there was any damage, and, as always, we can use the rain.

Saturday, I was determined not to go ANYWHERE. Mal was "bored" but I loved it, and he ended up thinking of a lot of stuff to play. Sunday, we had our morning play date at McDonald's with his friend, Ryan, then stayed home the rest of the time. It was super awesome not to have any unpleasant surprises or medical appointments. 

Monday, Mal met with a speech therapist/feeding specialist to address the fact that he just doesn't want to eat a variety of foods. We'd made the appointment back in October but they're really backed up. It was kind of frustrating -- we had to wait more than half an hour after our appointment time, the session itself was an hour and a half, and she suggested several things that I am unwilling to do as I feel that they interfere with intuitive eating -- and interesting -- Mal has a mild sensory processing disorder, we should get him an electric toothbrush just to desensitize his mouth to new/unique sensations, and that studies have shown that if a child will put a food in their palm, they are likely to eat it.

I feel like we have some good starting points, but will likely not go back. They want one meeting a week, and for a half day, including the 40 minute drive there and home, it's just not worth it. Also, obviously, for any therapy to work, there has to be patient buy-in. It will shock you to know that Mal's just not that into it. Finally, I could tell in the intake paperwork that some of the people they help have a lot bigger issues than Mal does, and I don't want to take up an appointment that could be used by someone who genuinely just won't or can't eat.

Monday night, James and I voted (sorry LISD, but our property taxes are already ridiculously high, and it seems like your schools are pretty impressive without the three new bonds) then went to pick up food we'd ordered from Piroshky Piroshky Bakery in Seattle. Apparently, they have come down to Austin annually for a few years but this was the first I'd heard of it. Holy cow, were those things good.

D has a routine medical appointment later this week, then I think we're done with doctors and dentists for a bit. I hope so. We've blown through our dental insurance this year. Plus, you know, it's my preference that humans and felines in this house feel good and are doing well.

Let's all keep our fingers crossed for a boring week, people!