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!

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!

One Way to Spend a Day

Do you have periods? Do you hate them with a burning passion? Do you wish you could STOP having them? Have you, in fact, stopped having them as often and are super excited that you're about to be done with them forever? Do you think that there couldn't possibly be anything worse or more demoralizing than having to deal with bloody bodily fluids for several days per month?

Good news! There's something that is WORSE! It is so dehumanizing and challenging that it will push you to the brink of depression in a mere 24 hours!

I can tell: You're chomping at the bit. You're ready to hear what this miracle torture is. Well, great! I'll tell you.

It's called a 24-hour urine test. And if you're a lady and you go to Quest Diagnostics, they'll just hand you the same thing that I assume they hand a man: a container that looks vaguely like what you keep in the trunk of your car for in case you run out of gasoline and need to walk to a gas station and bring a half-gallon of gasoline back with you.

No instructions.

No way to collect the sample at all except to figure out how to eliminate into a small circle on a large jug that you will have to lower into the toilet, resulting in your having to clean the toilet, around the toilet, and the jug EVERY TIME YOU GO TO THE RESTROOM.

______________

I started this blog post 2 weeks ago, just after I'd done this. It sucked. It also confirmed that I have hyperparathyroidism, so I'm going in for a throat ultrasound and a bone density scan this afternoon. Fun times. Even the surgery to remove any offending parathyroid glands would be better than that stupid urine test. Also, if I had to choose between doing that 24-hour urine test or colonoscopy prep, I'd pick the colonoscopy prep every time.

Furthermore, I went 155 days without a period and started up again the day before we left for Phoenix last week. Good times. It was 118 days last year; wonder what I'll get up to next year or the year after before finding myself pregnant at the age of 62.

The Wonders of Modern Medicine (and TMI, maybe?)

A few years ago, I'd read more than one study showing that there was a correlation between people who were on an antiviral like Acyclovir to treat herpes and a lower incidence of Alzheimer's development. There wasn't and still isn't a clear answer as to whether this is at all causal, but it was of interest to me for two reasons: 1) I have a family history of Alzheimer's, and 2) at the time, almost every month, toward the end of my cycle, I would get a cold sore.

If you've never had a cold sore (or fever blister or whatever colloquialism you use for it) before, then... well, I guess good for you, you smarmy devil. But they initially tingle, then hurt like the dickens for 3 days, then seep for a couple of days, then dry up and scab over, then take a good week to heal. So we're looking at 2-3 weeks of dealing with this. Every month or couple of months. I HATED IT.

Sometimes I didn't get one. Sometimes, I'd get more than one (like the time I spent a whole day on a boat on Lake Mead and got super sunburned then ended up with at least 5 cold sores all around my mouth). Once or twice, it tried to come up INSIDE OF MY NOSTRIL.

As soon as I'd feel it coming, I'd apply Abreva topically and swallow a ton of Lysine. Sometimes, I'd stop it in its tracks. Many times, it didn't matter what I did. It was going to break out.

My doctor had no problem putting me on acyclovir. Ever since then, it's been perfect. I hadn't had a cold sore in years. I'd had a couple of instances where I'd felt the tingling, but then between the preventative, medicine, and supplement, we'd stop it!

Until last month.

Ugh.

As I've mentioned, my body is vaguely trying to stop having menstrual cycles. I went about 120 days last year, then had regular periods for three months. This past month, I didn't have a period. But when it got to what would have been my last day if I had, I started feeling that tingle. I've since gotten topical Lysine, which is a lot cheaper than Abreva and as effective, if not more. Except this time, all efforts were impotent. I got a stinking cold sore and it reminded me of how much I appreciate how effective the anti-viral has been for the past few years.

A further complication here is that I've stopped wearing make-up in the past year. I didn't have any concealer, so it was just out there, doing its disgusting thing (I do wear tinted lip balm and sometimes eye-liner). 

This was about a week into it, when it had started crusting over.
I did break out the left-over powder to try to even out the screaming red color.

Here's the thing I hate the most about it: It's all I can think about when I have one. First, it just hurts so badly. Then I know how messed up it looks, and sometimes I realize that part of the dry skin or scab has started peeling off, and then I wonder how long it's been that way. It's just such a dang focus and I despise that it takes up that much mental space for me.

The moral of this story is maybe that I'm super vain, maybe? Or is it that life is demonstratively better when you can afford or have offered to you "good" insurance that allows you to see doctors for non-life-threatening conditions. My quality of life is improved so much just being on maintenance meds for asthma and cold sores. Using my inhaler once every other month instead of 6 times a day is like a miracle. Being super bent out of shape about the first cold sore in 3 years instead of being super pissed that it's happening for the eighth time in a year is the same. I feel like that sort of peace of mind and care should be equally available to everyone, and not just lucky and/or "rich" folks. 

My Annual Physical

For the majority of my adult life, I have not had health insurance. It's expensive, and even when there was a mandate... the tax/fee was cheaper by far than insurance premiums would have been. And I'm fortunate. I have few health issues, rarely require a doctor, and have not been severely injured (except for my spine, when charity was remarkable and I received top-notch care).

Now, I've had insurance for so long, I was able to attend my SECOND annual physical with my doctor! (Thanks, honey; keep workin' hard!)

When I checked in, I was given a handout to sign that was basically "what to expect at this physical." I had to turn it in, so can't quote it, but it basically said that it would NOT cover new health issues. It was basically to follow up on last year's stuff, and to assess my general health state. One thing it told me we might cover was "weight management."

Except that we didn't because, as usual, I did not weigh. I told the nurse, and she looked puzzled. I said, "There should be a 'patient refused' option." There was. When she looked at my chart, she said, "Oh, you didn't weigh last year, either." No. No, I didn't. I explained that after 30 years of eating and exercise disorders, and feeling like crap about myself anyway, I was in recovery and that knowing that number was not conducive to my continued well-being.

One interesting thing is that I was given an initial pneumonia vaccine. I'd never heard of it; apparently it is de rigueur for the 65+ set. But because I have asthma, I'm more susceptible to it. I will get the second shot next year, and that should do me for the rest of my life. I also got a tetanus shot since I cannot remember ever having one in my adult life. Bring on those rusty nails!

I have to do some bloodwork to compare to last year's, but basically, the doctor said I'm probably going to live forever, so that's cool.