I love watching your videos! So happy you're able to get this treatment and I am happy you're back on TH-cam for a littlr bit. Wishing you all the healing vibes! I'm hoping I'll be able to get saline infusions regularly sometime soon.
Lol - I was so confused at first. I watched a few minutes of the original video last night - but was soooo tired and went to bed. Got up this morning to start watching the rest and was like "huh"? So good to see another video, and I'm happy that you can get the infusions :).
This is rather late but I just found this video. I have problems with heat and while I have never purchased a cooling vest, I sorta made a diy one. I bought a denim vest from a garage sale and sewed pockets on the inside of it. I put ice packs in the pockets and find that it helps me a lot. It looks pretty funny but it helps me when driving and only cost about 7 dollars (I already owned a bunch of different ice packs).
I just discovered your Instagram a few days ago, and now I've discovered your youtube! I have lupus + possible pots and a plethora of other issues. Your tweets and videos are so wonderful. I hate that we have to deal with such shitty things, but it's nice knowing other people out there in the world know what you're going through. I'm in the middle of a flare up and I'm just at a loss at what I should do for treatment. I've spent so much time and money at doctor's offices and hospital visits and they've done nothing for me. I hope I can figure out something soon. I know this video is a year old, but I hope you're doing ok! Much love to you.
Emma Lovegood I’m so sorry, I hope your flare eases soon and that you’re able to find some treatment options that work for you! I know it can be such an exhausting process 💙💙💙 I’m going on my 3rd week in a row of bed rest, and I’m starting to go a bit stir-crazy, but hoping this is the tail-end of this flare 😅 Do you find this time of year always seems to hit you harder as well? It seems like every winter hits me harder than the last
Sick, Tired, and Alive I’ve been the same way for the last 3-4 weeks! Stuck in bed 🥴 it’s the worst, isn’t it? I’ve been able to move around the last few days so I hope this is the tail-end of mine as well as yours!! I agree, winter is always so tough for some reason. Summer and the heat are never fun either, but something about winter always beats me down. The weather is so chaotic and changes constantly where I live which always messes with me. Are you the same way with weather? And thanks for sharing ❤️ being stuck at home is another good way to start feeling like you’re all alone in the world - glad we’re not :)
Yay, another video! I'm glad that the infusion helped. Hopefully you can start getting them more frequently. Also, aren't pristine, new planners the best?
I totally did not even know that was a Thing, and just shove a bunch of icepacks in my bra, under a hat, and those long ones with strings from hospitals, I tie them together around myself so one's over my lower back & the other over my belly button 😂😂😂 No fucks given about how ridiculous I look, lol, it can't be any worse than any other mutant superhero suit, right? 💜
Have you been tested for Lyme disease and other tick borne infections? Pots is commonly associated with tick borne illnesses. Heat sucks for POTS especially humidity... No one like humid weather 😥
Dysautonomia already makes it incredibly difficult to retain water, but in combination with my gastrointestinal issues I also can't consume nearly as many fluids as I need to in order to compensate for that. So, I'm chronically dehydrated, which makes my POTS symptoms significantly worse. Saline infusions help with this, at least until I get in to see the Gastroenterologist in October. Hopefully we'll be able to figure something out so that I can get enough fluids orally.
Much appreciate messenger.
EDS is so hard to live with.
Love and light to all. Stay positive
I love watching your videos! So happy you're able to get this treatment and I am happy you're back on TH-cam for a littlr bit. Wishing you all the healing vibes! I'm hoping I'll be able to get saline infusions regularly sometime soon.
Lol - I was so confused at first. I watched a few minutes of the original video last night - but was soooo tired and went to bed. Got up this morning to start watching the rest and was like "huh"? So good to see another video, and I'm happy that you can get the infusions :).
A new planner is such a good feeling
Almost any relief is better than none.
Also, it's good to see you back.
Exactly! Relief is so rare, I will gladly take whatever I can get.
Thank you
Glad you're back, and got more treatment. Keep making videos please.
This is rather late but I just found this video. I have problems with heat and while I have never purchased a cooling vest, I sorta made a diy one. I bought a denim vest from a garage sale and sewed pockets on the inside of it. I put ice packs in the pockets and find that it helps me a lot. It looks pretty funny but it helps me when driving and only cost about 7 dollars (I already owned a bunch of different ice packs).
I just discovered your Instagram a few days ago, and now I've discovered your youtube! I have lupus + possible pots and a plethora of other issues. Your tweets and videos are so wonderful. I hate that we have to deal with such shitty things, but it's nice knowing other people out there in the world know what you're going through. I'm in the middle of a flare up and I'm just at a loss at what I should do for treatment. I've spent so much time and money at doctor's offices and hospital visits and they've done nothing for me. I hope I can figure out something soon. I know this video is a year old, but I hope you're doing ok! Much love to you.
Emma Lovegood I’m so sorry, I hope your flare eases soon and that you’re able to find some treatment options that work for you! I know it can be such an exhausting process 💙💙💙
I’m going on my 3rd week in a row of bed rest, and I’m starting to go a bit stir-crazy, but hoping this is the tail-end of this flare 😅
Do you find this time of year always seems to hit you harder as well?
It seems like every winter hits me harder than the last
Sick, Tired, and Alive I’ve been the same way for the last 3-4 weeks! Stuck in bed 🥴 it’s the worst, isn’t it? I’ve been able to move around the last few days so I hope this is the tail-end of mine as well as yours!! I agree, winter is always so tough for some reason. Summer and the heat are never fun either, but something about winter always beats me down. The weather is so chaotic and changes constantly where I live which always messes with me. Are you the same way with weather? And thanks for sharing ❤️ being stuck at home is another good way to start feeling like you’re all alone in the world - glad we’re not :)
Yay, another video lol. This is great news glad you are getting these infusions.
Yay, another video! I'm glad that the infusion helped. Hopefully you can start getting them more frequently. Also, aren't pristine, new planners the best?
Yes- def live stream !
I had never heard of a cooling vest but it seems like a really good idea. I can't function in this heat, so maybe a cooling helmet too? haha
LOL Cooling helmet, yessss. Need basically the cooling version of a snowsuit.
That would perfect!
I totally did not even know that was a Thing, and just shove a bunch of icepacks in my bra, under a hat, and those long ones with strings from hospitals, I tie them together around myself so one's over my lower back & the other over my belly button 😂😂😂 No fucks given about how ridiculous I look, lol, it can't be any worse than any other mutant superhero suit, right? 💜
Have you been tested for Lyme disease and other tick borne infections? Pots is commonly associated with tick borne illnesses. Heat sucks for POTS especially humidity... No one like humid weather 😥
I have - and we re-check periodically as false negatives are not terribly uncommon with these tests. So far, nothing has come back positive.
Woot ... monthly planning ^_^
Nice to see a vid 👍❤️
How long will benefits of that saline dose (1L every 2 wks) last you? I'm guessing a few days?
Why the saline infusions?
Dysautonomia already makes it incredibly difficult to retain water, but in combination with my gastrointestinal issues I also can't consume nearly as many fluids as I need to in order to compensate for that. So, I'm chronically dehydrated, which makes my POTS symptoms significantly worse. Saline infusions help with this, at least until I get in to see the Gastroenterologist in October. Hopefully we'll be able to figure something out so that I can get enough fluids orally.
Well...I’m confused
I didn't realize I had forgotten to edit out, like, 3 minutes of nonsense on the first one. Blame Hugo tbh.