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#potsie
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Sorry I have been so quiet lately. Things have been wild RL.
A couple of days ago, I was diagnosed with POTS. And suddenly a lot of my symptoms I have been having that prevent me from working finally make sense.
I had no idea... I have been to several doctors who just didnt know what to do. Ran many tests over the years for different things and nothing was really found. But then my doctor who I have been seeing the past few years has been really amazing and keeping track of my symptoms as they have worsened and she really cares and listens. We talked about POTS before, but something made her sure and she got me in to a tilt table test. I didnt expect much because most eveyrthing else turned up nothing. But they didnt even need to do the full test. As soon as they sat me up, my heart rate shot up and they were certain.
I still dont know how to feel. I feel relieved but also scared. But I hope I can finally start to take steps to feel and manage my symptoms better
Doing some finances (since unemployed and job hunting) today and calculated that the peak cost per day of my #POTS medication is $8.
$56 a week.
It's not the only medication that I take and it's a take as needed medicine so I can skip days/times where I have the space to deal with the symptoms. But ouch. I wish that was covered under the PBS. #Australia #potsie
Honestly hate how connected the gut is to #POTS . Had a decent lunch and now I'm having to lay down since it caused my symptoms to flare up. #potsie #dysautonomia
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I didn't get any formal exercise today but I worked at the food bank and hauled a bunch of food into the building and down to the basement. Got 52 zone minutes on my #fitbit and my 5000+ steps in. I feel confident that I got cardio and weight training done. I also felt #POTSie today. Lightheaded, feeling like I needed to sit, anxious, cold extremities & foggy brained. I put on compression socks & my ab binder & felt better within an hour.
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All of the #yoga stretching that I'm doing has opened up my cervical spine. I knew the muscles in my neck & shoulders would get stiff when my #POTS flared but I didn't get how tight everything was until I started doing intentional movement for my neck.
If you're a #POTSie, I strongly suggest yoga stretching. I know, I know. Movement hurts. Yup. It does. Start slow but be consistent, even when it hurts. You're deconditioned, not dead. You can do these laying in bed.
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Today I rowed 528 strokes with #DarkHorseRowing, 25 minutes of #yoga stretching.
Attempted standing weight training. It didn't go well. Dizzy. Nauseous.
Feeling #Potsie. It's a hard thing to describe because there's no outward illness. I had a hard time getting out of bed, didn't feel really awake until hours later, my head was swimmy, just... off all morning. But I'm doing so much better now. I'm not going to beat myself up too much over the weights. I'll keep trying! #KickingTheShitOutOfPOTS
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627 #rowing strokes in 32 minutes with #DarkHorseRowing and 31 minutes of #yoga stretches with Cheryl at Your Journey Yoga. Beautiful workout. I'm shaky but I think I'll be ok once I eat. I never not eat before working out. Not making it a habit after today.
I uploaded the workout to my #fitbit 77 zone minutes so far today. With #SquareDancing later I bet I can top 100.
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35 mins of #Pilates.
If you've never done it I say give it a try, especially if you're a #POTSie. I never would have thought I could do it but I started small- my first few YT classes were 10-15 mins long & there were times that really were uncomfortable. Consistency is key. Keep showing up for yourself. If you can't do 10, shut it off at the 5-7 minute mark. You'll progress. Just keep showing up for yourself. (I guess this is the motivation I was looking for.)
#KickingTheShitOutOfPOTS
I also reduced my beta blocker to 1 pill/day. I'll do this until my body feels no longer totally out of control. That should be 7-9 days, then I'll start taking it every other day. My heart rate is all over the place still but as long as I sit down if I start feeling buzzy in the head, I feel like it's ok. Once the propranolol is totally out of my system I should be able to ramp my workouts up & my system won't be battling pharmaceuticals. #POTS #POTsie
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@3TomatoesShort I buy the compression stuff for my #potsie open-toe thigh high work best here. Waist-high leggings caused too many triggers pulling down and back up for potty, etc., makes it harder to see benefits. Plus, with thigh-high, can sleep with them on if needed for really bad days. Our approach is incremental quality of life improvements (stack up & celebrate small wins). Switch to bc pill eliminating menstrual cycle was another improvement.
I’ve seen a lot of praise for this article
National Geographic:
What is POTS? This strange disorder has doubled since the pandemic
An article about #POTS & the need for re-evaluation of exercise as treatment
#potsie #potsies #POTSlife #POTSparents #potssubtypes #PosturalTachycardiaSyndrome #posturalorthostatictachycardia #PosturalOrthostaticTachycardiaSyndrome @pots @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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You know you're a #potsie when you are excited about a new flavor of sports drink.
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@Fulltimesickgal Hi Lissa. I have a fellow #potsie here, along with my wife (also a Lissa), who has lessor, but similar symptoms. Aside from Rx, I’m curious what you find helpful? We have a long list, but always willing to share/learn. A recent one: #potsies here wear toeless compression thigh-highs and can’t function well without them, but recently got compression arm sleeves to help with days where arms are tired and need to write for school, etc. Helps a smidge some days.
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@AshWolf @WesElyMD one of the most frustrating things in helping my #potsie … healthcare. Docs don’t know about it, and I had to research symptoms to find potential cause, after we starting monitoring vitals and triggers at home. Once you find docs know about it, huge wait for specialists to rule out ‘more serious’ things. In meantime, we found a host of non-Rx mitigating measures to help improve quality of life on our own. Docs want a clear test & cure…QoL ignored.
@raych11 got my kiddos and wife dysautonomia awareness shirts to wear last month. Surprising amount of selection on Amazon, including sad-true-funny like yours, and more informative (e.g., listing the many, many potential symptoms). We even encountered a fellow #potsie on a recent trip, that we would’ve never know about if we hadn’t worn the shirts. Which was more surprising because of 2 Potsies feeling ‘well’ enough to travel and stop in same area more than anything.