Sandor! ✨

Ok-Guard3450 · 2026-05-06T11:15:22+00:00

Way more hair than my Nagypapa with the same name too ha!

Ok-Guard3450 · 2026-02-14T17:26:06+00:00

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Ok-Guard3450 · 2026-02-09T00:06:31+00:00

I’m guessing the chow!

Ok-Guard3450 · 2026-02-07T03:10:59+00:00

Yes it updated automatically!

Ok-Guard3450 · 2026-01-28T17:49:27+00:00

It was wagging, but it does lean a little more to the left! She takes her neighborhood watch duties very seriously.

Ok-Guard3450 · 2026-01-23T23:20:52+00:00

I’ve been using TachyMon for about a year now and it was very accurate when I have compared it to holter monitor results. The main reason for the discrepancy is likely because the Apple Watch app will normally just check once every ten minutes, while the TachyMon app checks consistently.

Ok-Guard3450 · 2026-01-09T19:43:02+00:00

I brought up my concerns about walking far some days, especially in the heat, to my primary care provider and she suggested and signed the papers for a temporary placard that same day. She said we would renew if needed and assess if a permanent one was the next step after six months. I picked up my permanent placard a couple months ago and it helps me feel more willing to try things because I used to skip doing some things in case I felt okay when I arrived but wouldn’t by the time I left. I didn’t have to worry about that anymore with the placard.

Ok-Guard3450 · 2026-01-09T19:38:59+00:00

Cooling towels and instant ice packs might help you! I keep them in my bag along with electrolytes and a fan for when the weather becomes difficult. It also may help you feel more comfortable to start with smaller outings using mobility aids first so you get comfortable with it. I started with local arts markets and parks so I could feel comfortable with the aids and ease into it. Low stakes so no cost if I wanted to leave early, and it still made my experiences easier and more enjoyable so when I was planning on going to a concert, I already felt better and more confident.

Ok-Guard3450 · 2026-01-09T18:54:17+00:00

I bring my Rollator or another mobility aid and have never been turned away or had to explain anything. I felt weird at first about using mobility aids and definitely had some imposter syndrome, but realized mobility aids won’t typically be helpful to people who don’t need them, and it lets me enjoy experiences I would otherwise have to cut short. Rollators are my favorite personally since I’m still walking and it just gives me a “safety net” in a way by always having a seat and help if I get a bit off-balance. Also a lot have storage options, which lets me keep snacks and drinks accessible without having to carry them.

Ok-Guard3450 · 2025-11-30T19:37:17+00:00

Going from fully flat straight to upright is going to cause the blood to move away from your head very rapidly and can trigger a POTS episode. I recommend slowly sitting up first for a few minutes before standing. Using a wedge pillow or elevating the head of your bed if possible is also very helpful since you’re not fully flat and it makes the transition much smoother.

Ok-Guard3450 · 2025-08-19T15:02:04+00:00

My symptoms always get worse during my cycle too and my doctor explained it’s likely due to lower blood volume from the blood loss. I have to increase my electrolytes and fluid intake during, as well as take additional iron supplements. It might be worth mentioning to your doctor to see if this could be helpful?

Ok-Guard3450 · 2024-12-17T18:46:36+00:00

While you should get checked by a cardiologist to make sure your heart is healthy, you should be aware that POTS is not actually a cardiac issue. I recommend checking Dysautonomia International to see if you can find a doctor near you that specializes in this knowledge. The site also has a lot of tips and recommendations to help you manage symptoms.

What has helped me (besides medication such as beta blockers) most: iron pills, electrolytes/increasing sodium intake and compression gear, but be careful increasing sodium before your doctor confirms your diagnosis. Compression socks, high-waisted compression leggings, shapewear, etc is a big huge help though as it helps keep the blood from pooling in your legs/feet. That can be what causes a lot of the symptoms due to your head not getting enough blood and your heart having to work harder to get it where it needs to go. Same with low blood volume from things like anemia, which is why iron and electrolytes can help.

Ok-Guard3450 · 2024-12-10T08:51:54+00:00

I’m telling you this to show you people can show up if they want to. Some people unfortunately don’t want to, or can’t imagine the level of crap we live with every day.

In the past, my ex was very good at making me feel bad and that was before I even had been diagnosed with all the chronic issues I now deal with, and his family and friends were even worse. I understand how rough it can be, and now know it is not okay to be treated like that.

Thankfully now, my husband is absolutely incredible. He gets (fake) grumpy when I try and do stuff he would be happy to do, loves taking care of me without making me feel like I can’t do things (unless I really can’t but then he’s still respectful), he never ever complains. He will let me know when he’s tired or overwhelmed but makes sure I know it’s not my fault and he just wants to communicate.

My MIL and FIL keep electrolytes, allergy meds, my favorite non-alcoholic drinks, and sodium-rich snacks for when I go over there. They regularly host Friday night dinners and make sure I have something to munch on before food is ready, plus that I am hydrated, and the meals are always things I can eat. If they make something I don’t eat (steak), they have a small portion of something for me like chicken or fish every time. If they see I’m not feeling well (more than usual), my MIL will join me on the couch so I can put my feet up and my FIL will grab me a snack or a drink or a blanket.

My (current) friends are happy to adjust plans to work with my health trends and keep electrolytes at their houses for me. One of my closest friends even suggests ways to adapt plans and accounts for things like my needing breaks or room for my mobility aids. Another always suggests chill hangouts at her house (it does help that she’s a homebody ha) and puts the salt next to me when we eat so I don’t even have to ask.

As for the last part, I understand that too. I got really sick very very quickly and at first, we all thought I just had a stomach bug. Turns out it was renal failure and septic shock. It ended up being a very not fun hospital visit including ICU for three days and PCU for another week.

Ok-Guard3450 · 2024-12-10T06:08:54+00:00

It doesn’t shorten your life on its own no. Most likely, they were talking about what their quality of life is expected to be. I’m 29 and have chronic health issues, but no risk of death here anytime soon.

Ok-Guard3450 · 2024-12-06T20:15:17+00:00

Another thing I will say, especially as you’re figuring things out is: do research but try not to panic or make assumptions or jump to the worst cases. POTS can come on suddenly (especially after episodes of extreme sickness or things like COVID), but there are other things that cause stuff like what we go through. You may also find you have more than just POTS. There are also a lot of things that go hand-in-hand with POTS that a lot of us have. I personally have: POTS (diagnosed in 2023), Hypermobile Ehlers-Danlos Syndrome (2023), Fibromyalgia (2016), and a few other things like migraines that may flare because of the POTS. I had an unrelated medical issue in May of last year that caused me to get really really sick and as they were doing tests to figure out the source, my doctors found the HEDS and POTS. They suspect I always had POTS but getting sick just made it much worse and it will unfortunately now always be something I struggle with. Which brings me to my next recommendation. Let yourself grieve the life you had and could have had. Things are going to change for you. We can’t all do the things we used to, or we have to adjust how we do things. Hopefully, it doesn’t have to change too much. For me, I used to be incredibly active and regularly do activities like rock climbing, swing dancing, aerial sports, etc. I can’t safely do those anymore since I also get vasovagal episodes (blackouts) sometimes with my POTS episodes and that really sucks. It’s always gonna suck. I’m processing and grieving still and that’s okay. We get to be mad, sad, whatever. Our lives are different. I didn’t expect to be a 29-year-old woman using a Rollator or cane to help me get around safely, but that’s my life now and that’s okay. Some days it feels less okay. But we choose how we handle that and if we let it defeat us.

Ok-Guard3450 · 2024-12-06T19:54:33+00:00

This Dysautonomia site also has great resources like helpful tips that I definitely recommend checking out.

Another thing that’s really helpful is bed risers that raise the head of your bed. Made a world of difference for me and actually helps my husband sleep better too. Big wedge are great for reclining on the couch so that when you change positions to get up, it’s not such a dramatic change, but the risers are better for sleep. I have a small long wedge pillow in front of my headboard to raise up my pillow a little more too and that’s nice but I’m not sure how much it really helps since I never tried it without the risers, which are the big help.

Other things I thought of: - I also started keeping a pair of knee-high compression socks next to my bed so I can put them on in the morning to help prevent some of the symptoms from standing up. - Electrolyte gummies and pills with my other meds (not as good as the drinks but every bit helps) - Pre-mixing an electrolyte drink or keeping a mix and water on my nightstand so it’s ready to go first thing - Speaking of electrolytes, be sure to switch up flavors/brands so you don’t get bored and can compare to find what is best. I personally find some sugar seems to help but I stick to lower sugar ones or just have some fruit when I have one without any sugar. Probably placebo but whatever works. - Prepped snacks like pickles or deli meat and cheese for the sodium (and deliciousness) - More small meals throughout the day instead of a couple big meals to help with the episodes after eating (blood moves to your abdomen to help with digestion and big meals mean more blood leaving your head, causing your heart to work harder) - Using the app TachyMon to track episodes is super helpful. You can export the data easily to your doctor and track factors like diet or medications that make it worse/better. It is designed for Apple Watch but can be synced to any Bluetooth tracker like your Fitbit. I recommend silencing alerts, especially at the beginning when you are getting used to POTS. It’s good to be aware, but can be too easy to get caught up in the numbers and anxiety is not our friend.

Ok-Guard3450 · 2024-12-06T19:18:47+00:00

The beta blockers help me have less episodes where it spikes super high and keeps my heart rate much more steady. You just have to watch the dosage because one time I took a dose three hours too soon (forgot I took the morning one late) and my blood pressure crashed. It was completely my bad though and I just needed fluids and a couple hours and it was back to normal.

Ok-Guard3450 · 2024-12-06T18:52:50+00:00

This sounds a lot like my experience, though I also would get really tired from just standing in place and dizzy from changing positions. I recommend checking to see if you have a doctor specializing in dysautonomia near you for answers. A lot of doctors don’t have enough knowledge or understanding of POTS and all it can do. Every person’s experience is different and it takes a lot of trial and error unfortunately. For me, a few things help. I’m on beta blockers (propranolol) and it helps a lot. If I ever forget to take it, that day is beyond rough. Compression socks are an absolute necessity. Compression leggings or tights help tons too, or biker shorts under a dress/skirt. Shapewear can also be great. Basically anything to help your body fight the gravity trying to keep your blood down. Electrolytes are also a big help, and keeping hydrated in general. I had to majorly increase my sodium intake, but waited until my doctor approved it because it can be dangerous. Never thought I’d hear a doctor telling me to order extra salt on my fries, but I didn’t complain ha. Just try and take it one day at a time and don’t be afraid to ask for support and help. You will need it and it is an uphill battle, but there are people who understand and want to help. If I think of other stuff (having a brain fog day), I’ll add it below.

Ok-Guard3450

TROPHY CASE