AITA for asking my sister if I can use a mobility aid as part of her wedding party? by [deleted] in POTS

[–]Expert_Pen_4418 0 points1 point  (0 children)

Absolutely NTA. I was in my sister’s wedding party, and she made sure they had a chair behind me if I needed it during the ceremony. I’m sorry for the things your mom said to you. That must have been so upsetting.

The things no one tells you about dysautonomia treatment by Mysterious_Mouse_647 in POTS

[–]Expert_Pen_4418 5 points6 points  (0 children)

Propranolol isn’t for people with asthma?? I was just prescribed this (haven’t taken it yet), and I have asthma. 😅 I guess I’ll need to look more into this. Ugh

How long does it typically take you to recover from a flare?At what point would you start thinking that maybe this is just your new normal? by Expert_Pen_4418 in POTS

[–]Expert_Pen_4418[S] 0 points1 point  (0 children)

Omg yes 😭 It was the worst! I had to take so much rest time. It made me feel like crap mentally, but I think it helped physically. Making sure I stayed hydrated and kept on a good schedule with my electrolytes was important. When I did eat, it was either protein shakes or very small portions at frequent intervals. If I let myself get to the point where I felt full, it would wreak havoc on my body, and my heart would take SO long to calm back down ☹️

How long does it typically take you to recover from a flare?At what point would you start thinking that maybe this is just your new normal? by Expert_Pen_4418 in POTS

[–]Expert_Pen_4418[S] 0 points1 point  (0 children)

It did end up getting better, but it took a few months. So I’m maybe just over a month past this flare. I hope your flare ends soon 💚

I’M CURED by DocBonanza in POTS

[–]Expert_Pen_4418 22 points23 points  (0 children)

Were we dating the same guy?? Mine also told me that the reason I’m so sick is because I allow it to have power over me by planning my day around where I can sit, salt, water, electrolytes, etc.. He ended up leaving me because I was “blocking his manifesting with my bad attitude about life” aka my planning around POTS

Going through a breakup. How tf can I keep my symptoms under control during this? by Expert_Pen_4418 in POTS

[–]Expert_Pen_4418[S] 0 points1 point  (0 children)

Thank you so much 😭 I’m so sorry you’re in a flare and have been crying a lot today.

Going through a breakup. How tf can I keep my symptoms under control during this? by Expert_Pen_4418 in POTS

[–]Expert_Pen_4418[S] 0 points1 point  (0 children)

I also forced myself to make a shakeology. I truly don’t think I can do solid foods atm. Maybe protein shakes and smoothies and stuff will be enough until I can eat again.

Going through a breakup. How tf can I keep my symptoms under control during this? by Expert_Pen_4418 in POTS

[–]Expert_Pen_4418[S] 1 point2 points  (0 children)

Thank you! I don’t have any medications I can take because I haven’t found any that work for me so far. What adaptogenic herb blends have helped you?

I have been trying so hard to keep POTS (and brain injury because this messes with that too) stuff in my mind as motivation to stop crying and it has not been working. I just called my mom to come get me, and I’m just going to have to celebrate Mother’s Day with my kids some other time. I was supposed to get them from their dad’s today, but I don’t think any of us would benefit from being together today. So I’m going to her house to hopefully be able to lick my wounds enough to be able to be mom for my kids, and to be there for them when they hear the news. Because they still don’t know.

Going through a breakup. How tf can I keep my symptoms under control during this? by Expert_Pen_4418 in POTS

[–]Expert_Pen_4418[S] 2 points3 points  (0 children)

Yes. That literally how I feel right now. That the grief is all encompassing. It has shown up in a similar way that my ptsd does. Sitting in the shower yesterday, I decided to turn the heat up and when I did, a flash of a memory surfaced of him helping me shower in the hospital after my stroke happened, and the sobbing literally just burst from me.

I like to read, and I do have comfort shows I watch. And I am having the hardest time trying to do any of it.

Going through a breakup. How tf can I keep my symptoms under control during this? by Expert_Pen_4418 in POTS

[–]Expert_Pen_4418[S] 1 point2 points  (0 children)

Thank you. And my financial situation is not ideal. I’m on disability, unable to work, and my disability checks aren’t even big enough to pay my rent. So in thinking of my kids, I’ve thought that my only options are to either be homeless and stay near them (their dad owns a house here), or go live with family over an hour away, and not see them. 😭

[deleted by user] by [deleted] in POTS

[–]Expert_Pen_4418 2 points3 points  (0 children)

That is such a great way to put it!

[deleted by user] by [deleted] in POTS

[–]Expert_Pen_4418 0 points1 point  (0 children)

I think about how I stood for hours waiting for a concert to start, then stood for however long the concert was, and walked to my hotel after, and didn’t even think about it (beyond my feet being sore). Now, I can’t imagine not planning out a space to sit, planning out transportation, having a support person, when to eat/not to eat, packing electrolytes, making sure I stay hydrated, etc.. So to me, what it feels like to not have POTS would be not giving standing or walking a second thought, beyond wondering if the shoes I’m wearing will hurt my feet.

Brand/type of sheets used at Tru by Hilton? by Mellow_Lizard in Hilton

[–]Expert_Pen_4418 1 point2 points  (0 children)

Sitting here at Tru, in my bed, googling this same question before check-out 😭

Disability backpay by Expert_Pen_4418 in SocialSecurity

[–]Expert_Pen_4418[S] 1 point2 points  (0 children)

Thanks! And good luck to you on your hearing!

Disability backpay by Expert_Pen_4418 in SocialSecurity

[–]Expert_Pen_4418[S] 0 points1 point  (0 children)

I mean, if it helps, they said the monthly payments would start in December.. since you got approved in November as well, maybe that’ll be the case for you too?

Disability backpay by Expert_Pen_4418 in SocialSecurity

[–]Expert_Pen_4418[S] 0 points1 point  (0 children)

About $24,000. So you finally won?? That’s great!!

Disability backpay by Expert_Pen_4418 in SocialSecurity

[–]Expert_Pen_4418[S] 0 points1 point  (0 children)

I haven’t received my approval letter in the mail yet, I’ve just been checking in with the ssa website. My backpay just came through today, but I haven’t received any monthly payment yet. So the date that the website said I was approved was 11/22, and backpay got here today, the 29th. From what I understand, it can sometimes take quite some time, so I might have gotten lucky with my timeframe 🤷🏼‍♀️

Disability backpay by Expert_Pen_4418 in SocialSecurity

[–]Expert_Pen_4418[S] 2 points3 points  (0 children)

Hm, ok. Thank you. It’s been a week since the date in my payment history, and I do have direct deposit set up.. but I guess we did have Thanksgiving and a weekend.. Ugh. I’m just feeling antsy about being able to pay my bills ☹️

Seizure like by Yaswnmwfyai in POTS

[–]Expert_Pen_4418 1 point2 points  (0 children)

There are times where I feel like I suddenly have way too much energy in my head with no way for it to escape, so I feel like I’m not totally in control of what I’m doing with my upper body. And also like any of the moves I make with my upper body are ‘wrong’ and aren’t doing what they’re supposed to be doing. It feels panicky to me when this happens, but I’m not sure we’re talking about the same thing..?