tj-crochets

[tj-crochets]

Question for all my POTS/salt wasting syndrome peeps out there! What's your go-to maximum salt meal or snack? Like, when you have to be outside and it's hot and you need as much salt as possible

[tj-crochets]

PATTERN: Great Diving Beetle by JennaWingateDesigns

[tj-crochets]

Thanks everybody!! From a “that’s my boss” perspective I don’t want to tell him anything, but from a “this specific guy is super nice and I believe I genuinely worried him” perspective I don’t want to alarm him??? Like. I already had to tell him my doc said “go to the ER now”

Also, got my test results back! I was dehydrated. Somehow. I drink so many fluids, I take electrolytes, and I was still dehydrated. I’m not entirely back to normal but I’m feeling waaaaay better, I’m going to move my work setup to a cooler part of the house tomorrow at least until this heat wave passes, I somehow underestimated how badly I handle high temperatures

So my endocrinologist called me back and had me go to the ER (for tachycardia and narrow pulse pressure) and I’ve been at the ER for about two hours, just getting IV fluids and waiting for test results. I’m pretty sure I’m fine, my heart rhythm is always always regular, but now I have a dilemma

What do I tell my boss tomorrow? I had to tell him my doc told me to go to the ER, because I had to leave work early, and he was really good about it, but I have zero idea what to say tomorrow. Work knows I have asthma and some allergies and nothing else. Do I say one of the medications I’m on makes me more susceptible to heat and my doc was worried I had electrolyte issues with the heatwave?? Do I say “sorry false alarm”????

[tj-crochets]

So my endocrinologist called me back and had me go to the ER (for tachycardia and narrow pulse pressure) and I’ve been at the ER for about two hours, just getting IV fluids and waiting for test results. I’m pretty sure I’m fine, my heart rhythm is always always regular, but now I have a dilemma

What do I tell my boss tomorrow? I had to tell him my doc told me to go to the ER, because I had to leave work early, and he was really good about it, but I have zero idea what to say tomorrow. Work knows I have asthma and some allergies and nothing else. Do I say one of the medications I’m on makes me more susceptible to heat and my doc was worried I had electrolyte issues with the heatwave?? Do I say “sorry false alarm”????

[tj-crochets]

I wear mine mostly just below my elbow and almost never wear sleeves if I can get away with it, so I can't really answer the "how much will it show against a shirt" thing, but it does not look like a heart monitor at all. To be honest, when worn just below the elbow, it looks almost exactly like the pressure brace thing my mom wore when she got tennis elbow. No electronics are visible while you are wearing it, and the only label it has is a very small "Polar 360" written on the side of the plastic part that contains the sensor, and I think the sensor is maaaybe 1/4" thick so that writing is pretty tiny? One downside I am finding with this arm band is that when I have a sudden, sharp increase in heart rate (like when I stand up) it doesn't always register it correctly. That's not necessarily a fault of the band itself; I have a few other medical issues that mean I have a tendency to glitch out pulse oximeters as well*, but it does mean that it does not register the highest heart rate I get to *I'm like mostly sure the issue is low blood volume combined with low blood pressure meaning there just isn't enough blood for them to register heart rate correctly with the lights, especially right when I stand up. If that's the case, idk if there's really a workaround for that? Like, can't measure the way the blood moves if there is not enough blood there to measure, not the arm band's fault lol

Hey y'all, do you have any experience with the Visible app and arm band thing? I've been using the app for a month or so, and I think it's helping a little, but I don't have the arm band yet and I'm not sure how big a difference that will make. I think I probably should be tracking my heart rate, but I cannot overstate how much I get rings and bracelets caught on things, especially during flareups. Like getting beltloops caught on door handles but even more so, so I think maybe the arm band will be better for me?

[tj-crochets]

Update: pokemon plushie delayed on account of I stood up after sitting on the floor and my current increase in heart rate from sitting to standing is in the 50-60 bpm range right now and it feels Real Bad I did manage to sew another quick pair of limbs for the rainbow stripe creature so I'll get those hand-sewn on since I can do that while sitting still

[tj-crochets]

A day in and wooloo is winning, with mimikyu in second! Also I forgot swablu in the list of "easily plushifiable pokemon" lol

[tj-crochets]

Hey y'all! Some POTS related questions for you, if you have any advice. In no particular order: 1. How do you climb stairs while raising your heart rate the least? On good days stairs aren't a problem for me but on bad days not going slow means my heart rate goes fast but then going slow means I get the "standing in place too long -> low blood pressure -> high heart rate" problem so either way my heart rate goes up (if it helps I am mostly looking for answers for the stairs in my own home, which are carpeted and I can traverse them at whatever speed or method I want, my family understands I have stair issues) 2. Do you ever have issues with low blood sugar*, and, if so, on days where you have low blood sugar does your POTS flare up like whoa once your blood sugar starts coming up? 3. This is more Visible app/heart rate tracker related than strictly POTS related but it's blowing my mind, so I have to share it. Usually going up the stairs for me is .3 pace points. Today, during my flare up, it was .8, and then my walk across the flat ground from the stairs to the bathroom (not that long a walk!) with a detour to my desk to set down some stuff was 1.6 pace points. Taking my meds was 0.7! I knew, and could feel, that my heart rate gets pretty high during a flareup but I didn't realize it was that dramatic a difference, and seeing it on a chart as hard data really helps me put it in perspective and allow myself to rest more *technically I don't have hypoglycemia I just have "fasting blood sugar when not fasting" according to my docs, but today by the time I started to feel better enough to realize something was wrong, my blood sugar had come up to 84, so I very strongly suspect I was hypoglycemic

[tj-crochets]

Someone please remind me: giant wooloo plushie, I've got the perfect fabric for it

[tj-crochets]

Thank you everybody for the answers to my extremely vague blackout curtain question!! Also thank you for the answers to the multivitamin thing but wow I didn't realize quite how badly I was doing at the time I asked about blackout curtains, I really appreciate y'all interpreting that for me I'm doing a lot better now, and my Visible arm band is on day five of data collection, which means it now warns me when my heart rate gets too high*. Today was also coincidentally the monthly work meeting that ends with trivia questions where my coworkers and I can win gift cards and I got way too competitive and my phone alerted me to my high heart rate because I was too invested in the trivia competition lol *you can opt in or out of the notifications and change how often they alert you (immediately at raised heart rate, after two minutes, after five minutes, etc)

Hey y'all! I could use some advice, if you have a sec 1. daily multivitamins: do you have a brand rec, and especially, do you have a recommendation for one that is not plant based? I have a bunch of allergies to avoid 2. blackout curtains: how?? or like...what criteria/how do I figure out how to put them up/idk where to even start but there's a daytime thunderstorm and the lightning is triggering my flashing light issues like whoa and I have a work meeting I have to be functional for and I can't figure out how to word the question

[tj-crochets]

Hey y'all! I could use some advice, if you have a sec 1. daily multivitamins: do you have a brand rec, and especially, do you have a recommendation for one that is not plant based? I have a bunch of allergies to avoid 2. blackout curtains: how?? or like...what criteria/how do I figure out how to put them up/idk where to even start but there's a daytime thunderstorm and the lightning is triggering my flashing light issues like whoa and I have a work meeting I have to be functional for and I can't figure out how to word the question

[tj-crochets]

Another update! I'm still not past the four day setup period, so it's not giving me high heart rate alerts or like advice on what days are better for doing activities yet, but being able to label time periods of heart monitor data and have it assign "pace points"* is already showing me some things that I think will be helpful in how I think about managing my physical limits It's also showing me I can probably point out the exact times I am moving in my sleep because it shows in my heart rate (I am a chaotic sleeper but it's been a while since I've hit the wall in my sleep so I'm doing better lol) *for people without the app, I'm currently thinking of them as like spoons in spoon theory

I got my visible armband today! It says it will take a few days to adapt and start offering personalized heart rate zones but that means right now sitting totally still if I laugh even a little I'm in the exertion range Which on the one hand I do find it kinda funny but on the other hand probably means it's a good thing I've been taking time to sit still and rest and recover for a bit even though I am having trouble with it

[tj-crochets]

So one of my neighbors is having a baby and I already have a space/astronaut themed baby blanket done that I'll give her, but what stuffed animal should I make to go with it?

[tj-crochets]

An update: on first attempt, I strongly disliked the feel of it on my upper arm, but was able to have it just below my elbow with no problem at all. I was a little apprehensive that I wouldn't be able to sleep with it on but I had a migraine and had to take a migraine nap and was able to do so with zero issue! Didn't even notice the feel of the arm band

I got my visible armband today! It says it will take a few days to adapt and start offering personalized heart rate zones but that means right now sitting totally still if I laugh even a little I'm in the exertion range Which on the one hand I do find it kinda funny but on the other hand probably means it's a good thing I've been taking time to sit still and rest and recover for a bit even though I am having trouble with it

[tj-crochets]

I got my visible armband today! It says it will take a few days to adapt and start offering personalized heart rate zones but that means right now sitting totally still if I laugh even a little I'm in the exertion range Which on the one hand I do find it kinda funny but on the other hand probably means it's a good thing I've been taking time to sit still and rest and recover for a bit even though I am having trouble with it

[tj-crochets]

I almost dropped the boggle box (boggle cube?) on my head while trying to get the dice in their places lol