It has been a week of doctor appointments, hospital tests, and a missed/rescheduled appointment for Jack. Oops. Hate all of that for me. Monday started out with a cardiologist appointment to try and get to the bottom of my POTS diagnosis. Unfortunately that appointment was just layer two of what is turning out to be a many-layered medical onion. Let's do a quick POTS recap of what it even is (this is for me too--I can never remember what it stands for):
- Definition: "Postural" (position), "Orthostatic" (upright), "Tachycardia" (fast heart rate), "Syndrome" (group of symptoms).
- Mechanism: The autonomic nervous system does not properly regulate blood flow, causing blood to pool in the lower body and the heart to race to compensate.
- Symptoms: In addition to dizziness and tachycardia, patients may experience brain fog, fatigue, palpitations, nausea, and trembling.
- Management: While there is no cure, it is managed through increased fluid and salt intake, compression garments, exercise, and sometimes medication.
My cardiologist recommended a lofty hydration goal, a lofty sodium/electrolytes goal, and introducing creatine and co-q10 to my daily regimen. He also wanted me to take an official, expensive, hospital-grade tilt test to be ultra sure POTS is the main culprit of my intense brain fog/fatigue/dizziness over the last year (really it's been on-and-off over the last two decades, but at a crippling level this last year). Then I'll need to get a bunch of bloodwork to rule out anything else. I know both these things are important in getting a precise diagnosis, but I hate them. I'm grateful (also grumbling) that they were able to squeeze me in for the tilt test this week while Alice was at preschool, so there was no need to figure out babysitting.
A tilt test is where they admit you to a hospital, strap you to a table, stick a bunch of probes on you to measure heart rate, blood pressure, and oxygen, then tilt you upright to see if you pass out. If you don't have an autonomic nervous system disorder, you will probably just stand there bored for half an hour. Maybe a slight bump in heart rate at first, but then basically just boredom until they lower you back down. If you do have an autonomic nervous condition...pretty much it's a "let's see how fast you can pass out" situation. I think I lasted 3 minutes. It was very bad. I DID NOT LIKE IT. I was pretty nervous in the days leading up to the appointment, because there's something that feels sinister about passing out while strapped upright to a table. I don't know, seems like a torture thing. I wish Jared would have been able to come to this one.
The real test went, unfortunately, worse than I had been imagining. I had to admit myself to the hospital, they told me I couldn't eat anything for the 8 hours leading up to the test (that felt like overkill--I would have passed out just fine without the fasting), and then during the test they're like, "You can/should talk to us and tell us how terrible you're feeling, but we aren't allowed to respond or say anything to you. Ok have fun, don't pass out, actually do!!!" Then they tilted me up slowly. Again, nothing crazy. Anyone without POTS would be bored. Within a minute I was lightheaded and could feel my heart racing. By the second minute my hands were cold and my vision going blotchy. By the third minute I was like, "My arms are numb. Everything's going dark. I can't do it, I can't do it, can we stop??!" Hyperventilating, fidgeting in my straps to try not to pass out, and then I don't know if I fully passed out, but I also don't really remember the next few seconds. They lowered me down and stopped the test, which they said they would only do if I passed out, so I guess it counted.
After being lowered down, I was shaky, freezing, and my arms remained numb for probably 5 minutes. It took me back to my hospital stays after giving birth. I was fully bedridden during the entirety of those stays and could not stand up at any point without passing out. I had to be wheeled out of the hospital with my babies 2 days after giving birth, each time, to not pass out. It makes me so sad for past Laura to know now that there could have been help for me. At the time I just assumed not being able to stand up without passing out was a typical postpartum experience. You really don't know what you don't know.
After my tilt test, eventually they helped me ease off the table and get out of there, and then I went and cried in the car for a while before driving home. For lack of a better word, it was just a really physically and emotionally cold experience. At home I cranked our thermostat up to 78 and it took me hours to warm up. I felt dizzy for the rest of the day and pretty much laid down and watched a bunch of movies, which is strange for me.
My biggest fear is that I didn't last long enough for them to record the numbers needed for an official diagnosis. I don't think I could go back and do another tilt test again. For my stand tests in the past, my heart rate was observed over the course of 10 minutes after going from laying to standing. I did have to hurry and lay down to avoid passing out halfway into one of those. Without lasting a full 10 minutes, there may not be enough data for them to look at. They are looking for a heart rate spike of 30+ bpm over 10 minutes when going from laying to standing, with blood pressure remaining pretty stable. I have another appointment with my cardiologist for next month after I get my bloodwork done. We'll see what he has to say then I guess. In the meantime, lots going on to keep me distracted! Let's leave my medical saga behind and get to some pictures:
^^Alice wore one of Jack's old white button-ups on Sunday and looked like a fashion girl.
We have window coverings in our double-story family room! This is the point in the move when I do a big exhale that I didn't realize I was holding in. Window coverings make a big difference for me in how I feel in my home. There is a walking path behind our house that looks right into our main living areas. It feels nice to be able to close that out, especially when it gets dark outside and I don't know who might be looking in on us. Probably no one, but I still like the cozy feeling of closing the curtains in the evening.
Getting the curtains up was an UNDERTAKING with a capital every-letter-in-that-word. Definitely the most dangerous home project we've done so far. We should have rented scaffolding or hired someone to install the curtain rod, but that's a hindsight thing. In the moment, 3 ladders, 2 brothers and 2 sisters-in-law, and my parents felt like overkill "just" to install some curtains.
We have always used copper pipes as curtain rods in our homes. In our first home in Wyoming this was a budget decision since copper was pretty cheap at the time. We really came to love the color, sturdiness, and ability to cut them down to an exact size so we don't have to deal with curtains getting snagged on extendable rods. So. This was a really tall room and would be holding 18 feet worth of curtains. I knew we would need a long, thick piece of copper. I'm grateful to my brother Peter in the plumbing industry who was able to help me secure this 20-foot-long, 1.25" thick pipe and have it delivered to our house. The curtains were the first thing I purchased for this home, just after our offer on the house was accepted three months ago. So once we had the pipe and hardware, we just needed the manpower. I bribed my family over with pizza and put them to work. It seemed like a good idea to put the curtains on the rod first and lift the whole thing into place, but that ended up being too heavy. But they did it anyway somehow. I am shocked no one ended up at the hospital. But wow, now we all have some memories and sweat equity in our home and we LOVE the drapes more than we even thought we would. They make our house feel fully like a home, and it's nice to have this warm linen tone against all our white walls to warm up the space.
And now for the pictures!
It's been a good week! Jared took the kids to visit his cousin in St. George over the weekend while I spent a good chunk of time putting some desperately needed organizational systems in place and a few pictures on the walls. When the kids are home, it's pretty much survival mode 100% of the time, so it was very appreciated to be able to make some house progress. I will say, even if I unpack and organize 10 boxes (which is about what I did, since most of them were miscellaneous boxes, yikes), it feels discouraging to look around and still see a sea of boxes. It's going to take a few months before it feels like we're really winding down on the unpacking, and that's ok. Last time around it took a full 6 months (it's a task that is TOUGH with kids). Jared and the kids had a great time in St. George too. Jared's cousin has a 6 year old son whose energy matches Jack's impeccably. They played and played and played.
We are also making headway on our backyard plans. This is the year of exciting things that are giving me a logistical headache. Feels like each backyard decision holds a lot of weight when it's our forever house. It's also tricky because the whole backyard is on a steep slope, so leveling and retaining walls will be involved, and expensive. This year we're hoping to level and add retaining walls, plus a patio and a bit of grass. We'll see if there's room for a fence in the budget after that. If not, we will be adding the fence next year.
I ran out of cloud storage for my pictures, so today we get Jared's camera roll until I get to that!
We've had some cold days this week. Jack is going to be able to tell his kids he had to walk home from school in freezing hail, uphill both ways. Really it's just uphill on the way home and not too far, but it's a pretty steep hill. We're building character.
Sometimes it feels like we've got a really long ways to go until we're unpacked and settled, but Tim and Abby came over to help us bring in more boxes and unpack one evening this week, and just that one evening has me feeling way further along. I love living near family. Our kids all played great together during the witching hour, so it was a win-win-win for everyone.
Speaking of family, my brother Peter got us a plumber discount on a 20-foot copper pipe to use as our curtain rod in our great room. Now we just need the bell hangers to arrive and we'll have window coverings on all the crucial windows.
Most of my "free" time this week was spent (a) hyperventilating because I am surrounded by a thousand little projects I'm dying to get to but can't because kids. Specifically, kids in the peak of the toddler stage. And (b) becoming a landscape designer. Jared is starting to get bids to have our backyard done this summer. I figure if we're starting from scratch, now is going to be the most cost effective time to get it right. We will have to do the backyard in chunks over the next several years because it is sloped and therefore expensive, but knowing what we want it to look like down the road will influence what we need to do this first year. It's fun work to dream it all up, but it's taken several late nights to pour into several landscape design books and figure out the logistics. Hoping to get the ground leveled/terraced, some grass and patio put in, and fence up this year. Fingers crossed. And now for some pictures from our week:
Another week come and gone, and I suppose another year come and gone too. This has been one of our busiest holiday seasons yet, between the move and family activities. We have had a wonderful time, and it feels good to be starting fresh in a new year--one that will not have a big move crammed into it. Last year I set several resolutions about unpacking and other such things. This year I'm going to try not to put too much pressure on settling in, and just accept that it will take time. Instead of resolutions I'm trying the thing where you choose a word for the year. My word is "unwind." We'll see how I do. I have become quite wound up after many, many years of big life events one after the other. This year I am taking several deep breaths, maybe unpacking here and there, hopefully getting the first bits of a backyard put in, and then taking some more deep breaths. Maybe I'll take up weaving again. Wild stuff.
Jordan and Amanda's family came to visit this last week. The kids were in heaven. It's always sad but sweet when we drive away after saying our goodbyes at the end of the week, and hearing Jack fall into tears in the back seat. This is extra sweet since he's our tough guy and doesn't do a lot of crying usually, but the bond he has with his cousin Asher is special. He always cries after an Asher goodbye.
I was grateful to have family over to our house for a playdate this week. We had initially planned to host New Years Eve, but frankly I chickened out because our house feels pretty chaotic to me at the moment, and my parents hosted instead. But lots of family came over the next day, and helped us put away our giant tree and get our bigger furniture pieces put into place, and Amanda helped me pack the Christmas decor away and shared some organizing tips while our kids got absolutely filthy in the muddy backyard. It feels like a weight has been lifted going fresh into the New Year this way. We still have a long way to go settling into our house, but I'm taking a *deep breath.* One step at a time. And now for some pictures from our week:
I am thanking all my lucky stars that we are all *currently* healthy (knock on wood). Jack and I both had scares over the weekend with 1-day viruses we feared would turn out to be the flu. Luckily for Jack it was one day of mild nausea (likely from our traditional post-Christmas Johnny Rocket dinner/milkshake). And for me it was one day of intense fatigue/chills/muscle aches. I was certain I would be down and out for a full week like so many other loved ones who have been hit with the flu recently. I was grateful for the wake-up call of one day of sickness. I've been a little uptight about trying to make our home feel more livable after the move. It's the age-old reminder: the healthy woman has 100 wishes; the sick woman has one wish. So this week, I am grateful to be healthy in a home full of boxes and not-yet-organized cabinets. We have time. Unpacking isn't an emergency. Deep breaths.
We had a wonderful Christmas in our new home! We celebrated Christmas Eve at my Grandmother's home, hosted by Uncle Bryce. The food was delicious and the company was even better. The kids even had a great time, despite the other 5 children who were supposed to be there being stuck at home with the flu. Poor kiddos--what rotten timing. I was so grateful to get to share the Christmas Eve experience I used to have as a child with my own children. The highlight for me was my Grandma Roper reading Alice "Twas The Night Before Christmas" while Alice stood there, enthralled, through the entire reading. I loved showing our kids the Christmas decorations I used to "ooh" and "ahh" over. I loved getting a stomachache from eating so many chocolate toffees and chocolate oranges and sea-salt truffles at the dessert table. I loved the chaos of playing Christmas songs on the chimes together, and winning a can of vienna sausages playing Bingo. And then we loved going home and leaving out cookies and milk for Santa. Oreos saved the day--we've done much less Christmas baking than usual this year. Excited for next year to be more settled in and do more baking and decorating.
On Christmas morning, the kids slept until 7 a.m. and then came to wake us up, grins on their faces, telling us they already checked the stockings to see that no one got coal. We made our way out to see presents and stockings surrounding our fireplace and Christmas tree--a magical scene to break in our new home even more. Jared is the Christmas morning magic-maker in our family, at least during the moving season we've been in for the past few years. For me this comes with the price of letting go, because he does Christmas morning differently than I would if it were on my terms, but during a big move this is a tradeoff I gladly accept. And Jared does a wonderful job--really the only "problem" is he goes more extravagant than I would, but I just remind myself that the Christmas magic years won't last forever. "A bit too extravagant" and missing the mark on a few gifts isn't the worst problem.
Everyone had a nice Christmas, until I got up in arms because it was time to take some soup to my brother's family, who were all down with the flu. I was trying to get everyone into the car so we could go do this lovely, Christmas-spirit porch soup drop-off and they were all like, "U r bossy." And I was like, "Merry Christmas I'm going to bed. Do it urselves if u have a heart." To which they did do it themselves, and then my parents came over for dinner so I didn't end up going to bed after all. The Christmas drama😂 We ended up having a nice evening, and Jared had the next day off too for that lovely post-Christmas lounge day. We spent a lot of time in our finished Tree Room playing Mario Kart and Mario Party. Other than the little sick day blips, it's been a wonderful Christmas week in our new home. We continue to be smitten with our location, and we love looking out our windows to try and spot hawks, magpies, and the occasional deer. It's a peaceful view and we love it more all the time. Merry Christmas, and Happy New Year!
I'm blogging on my phone from the rollaway bed in Alice's room, at 5 a.m., while rubbing her hand to try and coax her back to sleep. I spent the last 4 hours on Jack's bottom bunk. Both are decidedly "NOT TIRED." I think Jack did eat about 25 cookies and have no less than 6 cups of cocoa at the Christmas party last night, so maybe that? Maybe just breaking in the new house? I'm not sure, but me tired. Send prayers and caffeine, because it's Christmas break. Oof.
The next day, wallpaper installers came and told me that due to the half-drop pattern match in our wallpaper, we would not be able to wallpaper from floor to ceiling. Luckily they were able to wallpaper the top 2/3 of the room, and we will wainscot the bottom third later. It looks great! I’m really happy with the bold pattern we chose. But. The cobalt blue trim/ceiling we agonized and labored over is the wrong color for the room😑 The wallpaper is more muted in person than it was on the screen, and the blue is too bright for the paper. I'm not sure we have it in us to mask everything off again to spray a new color—especially since last time we got a lot of overspray on the walls, which we can’t afford to do now that wallpaper is installed. If the blue was more of a navy it would be fine. If we went with a dark raspberry color from the paper it would be even better. I just know we don’t have it in us right now to repaint between Christmas and unpacking, and general painting burnout. I could leave it and just add the wainscoting in the same bright blue color, but I'm leaning toward waiting until we can repaint everything. I really want to get this room right.
Lots more to say from this week, but I'll let the pictures and captions do the talking since that design saga was already more than you bargained for.
